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MEWDS Multiple Evanescent White Dot Syndrome

Posted by anj on 1/17/2006 5:01:38 PM.

I was diagnosed with MEWDS last year - female, mid-30s, severely near-sighted seemed to fit the usual population. I was also told it's very rare & I'm unlikely to ever meet anyone else with this in my lifetime. I've been left with impaired vision (slightly blurred / lacks colour contrast, feels like I'm looking through a cloud most of the time) in the affected eye now the syndrome has apparently run its course. Anyone out there with experience of this - no-one really seems to know if this will get better / worse or I just have to live with it. Thanks.

There are currently 141 replies.

Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by tlavelle on 01/19/2006

I am going to give you some web sites

http://www.focusonretina.com/chapter.htm
http://www.vrmny.com/cotm16b.htm
http://www.vrmny.com/cotm19b.htm
http://www.fleye.com/doctors/meyer.html
http://www.aao.org/moc/dock/uveitis_print.cfm
http://www.eyepathologist.org/LIST.ASP?Title=M
http://www.postgradmed.com/issues/2005/03_05/margo.htm
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by sleepyjo365 on 02/12/2006

Hi there, I am a 31 year old female. I had MEWDS last year, I still have a considerably enlarged blind spot, and loss of colour and occasional white flashes in the bad eye. I have recently been discharged form the care of my doctors as they said it was as good as it was going to get and I just had to live with it. I now wear glasses and have a focussing problem since having the disease. So sorry not much help but at least you can say you found someone else who had the illness. Apparently there is about a 1 in 1000 chance of it happening again. The doctor said I would be ok to drive still as I have near perfect vision in my right eye. I think part of the problem is that the illness is so rare they really dont have enough research to go on about how things have been for people following the illness. I the UK where I live, I had to be sent to london as my local hospital had never seen a case of mewds before, so i've been under thier care for the last year.
Sorry to hear you ahve the same problems, but to be honest its good to find someone who has had the same as me!
Hope that helps. Jo xx
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by msm1st@aol.com on 02/14/2006

Hi, I'm a 45 year old female and was DX with MEWDS last October. Sudden loss of vision in my right eye. The vision loss was not 100% but rather limited to the central part of my visual field; the surrounding area was completely "normal." I could look at my boss for instance, and I couldn't see her face, but--at the same time I could see everything else around her--just not her head or face, etc. During this time, I experienced episodes of seeing what seemed like "golden dust" or tiny white sparkles in my field of vision, too. Then at times--especially at night, I'd see flashing lights, but as I said only sometimes. This went on for about 3-4 weeks and then it slowly got better. I thought I had multiple sclerosis at first or a brain tumor. It's very easy to also be DX with "Optic Neuritis" because it is typcially associated with MS. But as I'm guessing you all know that Optic Neuritis isn't MEWDS.

That being said, it's been about 4-5 months since my episode. I cancelled my follow up appointment with my Retinal Specialist because there is nothing--no treatment available and my vision had gotten better, though not 100% better. But, now after my appointment with my ophthalmologist today he suggested I see the specialist again. I have read conflicting info that MEWDS almost never returns but... then I've read, it can.

Do either of you know anything? I'm going to get glasses now for my issues with distances. My ophthalmologist told me that he'd only seen one case of MEWDS and that was 15 years ago. However my Retinal Specialist told me he too had only seen one or two cases in his experience. My vision while better, has not returned to what it was prior to MEWDS. I guess I'm just going to have to live with it. It was really scary at the time but I guess I'm ok, now... Any thoughts?
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by DH243405 on 02/16/2006

I'm a 19 year old female, but when I was 17 I was diagnosed with MEWDS. I kept seeing this weird flashing in my right eye, but hadn't noticed any decrease in vision. My mom took me to see the doctor on call, and after a really long examination I was told that there appeared to be some lesions on my retina. I had to come back to the clinic the next day (and several other times) for tests, and my vision had decreased severely. My case healed rather quickly, and my vision was back to normal within maybe three weeks. I have read that in some cases MEWDS can come back, although that is uncommon. However, the disorder itself is uncommon, so you never know. I really have no vision problems now, even though the other posters seem to. It's really weird that I just happened to come across this webpage.
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by kjgilk on 02/26/2006

Hi,
I was diagnosed with MEWDS 4 years ago. I was 40 at that time. Mine presented in both eyes which is atypical of MEWDS as it usually only affects one eye. I woke up one morning with a disturbance in my eyes that I thought was an optical migraine. I saw my doctor on the third day when I realized that I could not see my face clearly enough in the mirror to put on makeup. I was lucky enough to end up at the Casey Eye Institute in Portland Oregon under the care of James Rosenbaum head of the Uveitis Department there. Because my MEWDS was in both eyes they did not really know for sure until it started to fade...at that point I could not pick out my husband in the waiting room of people, I was esentially blind. Dr. Rosenbaum said that he had found one case of MEWDS that had responded to prednisone, and put me on a prednisone taper. I took my first dose before leaving Portland, I live north of Seattle on an Island apprx 350 miles away, by the time I got to the ferry to the island 5 hours later I woke up from napping and could see!! I could see clearly enough to read fine print. This really seemed like a miracle as like I said I really could only see shadows before, could not make out a semi truck right beside our car! So for those of you that still have some inflamation prednisone may work. You can look up Casey Eye Institute on the web.
I have little to no scarring and a very minor blind spot enlargement, with no return of the disease. I have just been diagnosed with another type of Auto Immune Disease though and wonder if there is not some kind of connection.
Hope this helps,
Kathy
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by Sally Marie on 03/20/2006

I am a 57 year old female that first had MEWDS in 1997. Again in 2001, 2004 and right now..March 2006. I had the flashes at first and felt like I was looking through a heavy grey curtain . Each time it is the same with the grey curtain. I don't realize I have it till its at its worst. My left eye has residual scar tissue and my periferal vision suffers more each time I have it. As I am calling my Dr to make an apt I will ask about this treatment of prednisone , and the relationship between MEWDS & colds. My first Dr in Seattle in 1997 said they thought it to be a virus of some kind. They had no idea what caused it,and at that time there was no treatment . In 2002, 2004 I was told there was still no treatment. So, yes, it does re-occur!
Optic neuritis ?
Posted by gia918 on 03/22/2006

Hello, I have optic neuritis now for almost 5 months.All illness that cause it has been ruled out. The night before it happen when I woke up with the vision loss in one eye , I had eaten something bad and forced myself to vomit and felt like i strained my head. I told this to the Dr,. but he ignores it and says its not that. Can an injury cause inflammation in the optic nerve ? The vision recovered alot but it is not the same I also see somewhat 3 D and have floaters in both eyes and dryness since this happen. Please let me know any advice would be great. Thanks.
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by pmc on 03/31/2006

How comforting to hear similar stories! I was diagnosed with MEWDS in 1996. I was first diagnosed (wrongly as it turned out) with optic neuritis and was hospitalized and treated with IV steroids for that, but later had normal visual evoked potentials and a normal MRI which I guess ruled out the neuritis (and, fortunately, the MS!). Then I was told my visual findings were typical for MEWDS. Like others here, I'm in my 30s, severely myopic (which I understand is typical for MEWDS) and had had some retinal problems (floaters & flashers) before. I'm also allergic to fluoroscein dye which complicated the diagnosis. For me, the MEWDS blind spot never resolved due to retinal scarring, although I was lucky that it wasn't in my central vision and I learned to live with it. It's now 11 years past the first episode, and I think I'm having my second - same symptoms, kind of an afterimage/blind spot that's fixed relative to my central vision, only this time in my other eye. I've got an opthalmology appt. this afternoon. At least I keep the med residents interested!
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by phellman on 04/04/2006

My story is almost identical to msm1st@aol.com�s. I am 51 now, but my episode happened four years ago, when I was 47. (Feeling that 47 wasn�t exactly �young,� I responded �thank you� when the retinal specialist told me that MEWDS was a �young woman�s� syndrome!)

I was in the grocery store one afternoon when just that sudden, my vision dimmed noticeably. Then the weird night flashes and light pulsings began. I scheduled an appointment with the local optometrist because I thought I had a detached retina-- the only thing I�d ever heard of that was associated with flashes.

My vision worsened, although my problems were mainly with my central vision. I had a larger blind spot in each eye, and a few other smaller ones, too. I could still function, but I could not read. Eye charts tests were useless because when I�d look directly at the letter, it would disappear. The optometrist couldn�t find anything wrong, and so she sent me to a retinal specialist in Dallas. (This was just a matter of days after the grocery store incident.)

The specialist was familiar enough with MEWDS that he diagnosed me on that first visit. He took pictures, of course. He assured me that MEWDS was self-limiting, although he did warn me that in some instances it was known to return (I went home and scoured the internet for information). He had me come back in one month and then in another month after that.

My vision did slowly get better, although for many months afterward I would see �sparkles� and vibrations whenever I would be in bright sunlight�I started wearing sunglasses whenever I went out in the sun. Also, I had some residual �light shows� at night when I would be trying to sleep. I occasionally still have a flash now and then.

Both of my eyes were affected, although my left one was substantially worse than my right. My vision is back to normal now, or nearly so. My left eye is not as good as my right, but I don�t know how much of my vision decline is due to the MEWDS episode, and how much is due to my age. After all, my husband borrows my reading glasses now, so I know that some of it is just that I�m 51.

I had improved so much at the end of the two months that the retinal specialist told me I didn�t need to come back unless I had significant regression. Then he told me the �real� reason he had been having me come in for re-checks: MEWDS is so unusual that he was going to present my case at an upcoming medical conference! He was basically just gathering data!

The whole thing was expensive, but thank goodness the insurance paid for it. The doctor even commented on how it was an expensive �treatment� considering that he didn�t do anything!
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by redee2go on 04/07/2006

I have had MEWDS for almost 5 years now. It has affected my right eye worse than my left eye. I have had recurring spots show up on both eyes. My vision has not been effected after the usual three to four week recovery period. Sometime when I change for a dark to a light place such as going outside in the sun after being in the house, I catch a glimpse of the spots. I have been going to a retinal specialist. I have a yearly checkup with the specialist. My onset was after a really bad cold that lasted for three or four weeks. I just couldn't seem to shake it. When new spots occur it is usually after a cold. I went to see the specialist for my yearly check up in Feb. and had not developed any spots in a year. First time that had happened. I began seeing the flashes of light last week, and now have 7 new spots on my right eye. This time I had not been sick. I think I have a total of 15 spots of deep scarring on my right eye and 4 on my left eye. Of the 15 on right eye, 4 are extremely close to the optic nerve.
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by hrt81696 on 04/08/2006

I was also told MEWDS was very rare to have reoccur,however here I am 10 years later with it occuring at least once a year.Mine seem to be coincidentally flaring up after being sick with either a virus or some sort of sickness.My first episode was in 1996 after an upper respitory infection,lasting for at least 8 weeks.I only have the flare up in my left eye so far.My vision returns but I am continuously left with some residuals such as blind spots.Tried the prednisone twice,no results.I gave up going to my opthamologist just to check in,seems like a waste of time.I only go in if it gets really bad.My last visit to the opthamologist I was told 2 other females in her office had also been diagnosed with this disease.So how can it be so rare.I live in a suburb outside of Chicago.The cause of this disease is still unknown to the doctors.Sorry to be so negative,but if I hear one more time how each patient diagnosed is told how rare this is, I will just scream.The eye doctors just don't have an answer.Hopefully they will some day find the cause and find a suitable way to treat this RARE disease.
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by RexJanes on 04/16/2006

1'm a 53 yo male with sudden onset of shimmering/photopsia in the temporal aspect of my left eye. Extensive workup including mri/ct, fluoroscein angiography and Humphrey/Goldman Visual Fields. Current working diagnosis is acute idiopathic blind spot syndrome or m.e.w.d.s. Does anyone else have the shimmering/photopsia?
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by angel_anna1979 on 05/04/2006

Hi am 27 and I am glad you can all see well enough to post. Just a little humor. I was diagnosed with acute idiopathic blind spot enlargement when I was 24 which the same as mewds or very similar. I went to the specialist when I saw flashing lights adn he ran tests for histoplasmosis and others i didnt know anything about It was only in my left eye. I think it is in my right eye know so I see the flaoters and clusters of little white dots. I just live with it. because they told me it would eithe rget better within a 2 year period or stay the same. Can everyone still drive I mean has it affected you central vision it hasnt mine I ll be glad if it will just stay like it is the only touble I have sunlight well going from light to dark or going from dark to light it like a strobe like affect I dont I am just glad I found some other people that had. Although my doctors never told it was rare. has anyone ever heard of anyone going blind from having this adn do you all have somewhat of a enlarged blind spot.
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by RexJanes on 05/05/2006

angel_anna1979 Please email me at RexJanes@comcast.net or Rex.Janes@med.va.gov I have a lot of information regarding a.i.b.s.e. Recently back from Midwest Eye Institute and Duke University.
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by BShores on 05/08/2006

Hi,

I have just been diagnosed with MEWDS last week. I'm British but I live in Germany, I'm just interesed in comparing the different advice and treatment people get elsewhere. I've been told there's nothing I can do but hope it may improve. It's good to know a lot of you have regained at least some of your vision. I've no idea really what to expect next, I'm just hoping it won't get any worse. There's so little information about it. If anyone has any tips or advice, I'd be really grateful.

Thanks!
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by BShores on 05/08/2006

Hi,

I have just been diagnosed with MEWDS last week. I'm British but I live in Germany, I'm just interesed in comparing the different advice and treatment people get elsewhere. I've been told there's nothing I can do but hope it may improve. It's good to know a lot of you have regained at least some of your vision. I've no idea really what to expect next, I'm just hoping it won't get any worse. There's so little information about it. If anyone has any tips or advice, I'd be really grateful.

Thanks!
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by kse on 05/13/2006

Hello --

I'm 44, female and fairly nearsighted (20/450). I've worn glasses since I was 9.

I recently had a spot in my left eye with flashes and saw my optometrist who said it was a "floater"...and that I would have to live with it.

Within a week of the "floater" it changed to what I describe as a charcoal grey film looking through a coarse mesh screen.

Luckily I have good insurance and went to an Opthamologist who referred me to a retina specialist who has tentatively diagnosed me with MEWDS. I have taken a blood test to rule out "birdshot", but he is pretty sure it's MEWDS.

I understand from my doctor that this could clear up to a great extent in 2 - 3 months "or so" if at all; but that all of my vision in my left eye won't return.

Anyway, I am willing to have a discussion with others on this related to dealing with the loss, feelings, etc.
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by kse on 05/13/2006

Hello --

I'm 44, female and fairly nearsighted (20/450). I've worn glasses since I was 9.

I recently had a spot in my left eye with flashes and saw my optometrist who said it was a "floater"...and that I would have to live with it.

Within a week of the "floater" it changed to what I describe as a charcoal grey film looking through a coarse mesh screen.

Luckily I have good insurance and went to an Opthamologist who referred me to a retina specialist who has tentatively diagnosed me with MEWDS. I have taken a blood test to rule out "birdshot", but he is pretty sure it's MEWDS.

I understand from my doctor that this could clear up to a great extent in 2 - 3 months "or so" if at all; but that all of my vision in my left eye won't return.

Anyway, I am willing to have a discussion with others on this related to dealing with the loss, feelings, etc.
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by RexJanes on 05/13/2006

BShores: MEWDS is very well documented in the medical literature. Usually myopic young females with sudden onset of decreased visual acuity, large scotoma extending from the natural blind spot, and photopsias..flickering vision/lights usually in the temporal field and usually involving only one eye. Frequently preceded by a viral infection.
The good news is that mewds usually resolves spontaneously without treatment in a variable period of time, with most articles noting a maximum time of 14 weeks. Even though symptoms improve, the blind spot may never return to normal. In the differential, are other disorders, including acute idiopathic enlarged blind spot syndrome, azoor, and multifocal choroiditis. I have started a white dot syndrome discussion page and will include many hyperlinks to these disease. Thanks and feel free to email me at RexJanes@comcast.net
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by mvogt on 05/30/2006

Hi,

I am a 31 year old female who is milding near-sighted, and just recently diagnosed with MEWDS. It has affected my right eye only and began with occassional flashes in the eye. It has progressed now a week later and I have cloud like formations in my eye making it difficult to see. It is very scary and I'm hoping it will just go away with no repercussions. I will keep you posted with the outcome.
Thanks for listening,
mv
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by Taun on 07/08/2006

I am a 37 year old female who had myopic vision before I paid for Lasek. I was diagnosed last year with MEWDS in both eyes. The specialist told me too indeed how rare this disease is. Only 2-3% of women get it. It sounds like a lot more after reading these articles. I thought I had it coming on again, but only in one eye this time. I was hoping I was wrong, I wasn't. I'm glad it is only one eye this time, but what a bummer considering it is suppose to be even "more rare" to have it happen again. I will get it checked out just to be sure. Just wanted to document another case for others to read. I think it helps to know you are not alone.
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by Taun on 07/08/2006

I am a 37 year old female who had myopic vision before I paid for Lasek. I was diagnosed last year with MEWDS in both eyes. The specialist told me too indeed how rare this disease is. Only 2-3% of women get it. It sounds like a lot more after reading these articles. I thought I had it coming on again, but only in one eye this time. I was hoping I was wrong, I wasn't. I'm glad it is only one eye this time, but what a bummer considering it is suppose to be even "more rare" to have it happen again. I will get it checked out just to be sure. Just wanted to document another case for others to read. I think it helps to know you are not alone.
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by rael_gloria on 07/10/2006

I was originally diagnosed with MEWDS, then it was changed to AZOOR, then to Histoplasmosis, now to Multifocal Choroiditis. Check out these other diseases, you may find that you fit one of them better - sometimes the doctors don't alway know.
rael_gloria@yahoo.com
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by anj on 08/15/2006

Hi everyone
Thanks for your responses; I must say I forgot to come back and look which shows MEWDS can be a thing to live with and forget about, in my case at least.
Well one year on from the MEWDS onset in my left eye I still have the same residual lack of colour contrast & slightly clouded vision, but it has got no better or worse in the 9 months or so since it settled. The sudden change of moving from dark into bright natural light is where the effects are most obvious to me, as other respondents have also noted.
Maybe one day someone will do some research into its causes, they know who to speak to about it if they do.
Cheers
Ann
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by poppet on 08/25/2006

Hi there,

I was diagnosed with MEWDs last year. The condition started after what I thought at the time to be an ocular migraine. When the migraine finished I was left with a small grey cloud in the left of my vision which spread gradually until most of my eye was covered and my vision was severel impaired. (could only read the very top letter of optician's chart). After about 3 months it seemed to recede and my vision became clearer and clearer eventually leaving only a grey cloud somewhere near where it had started. My blind spot perhaps? Anyway, it was a very scary experience and I was relieved when it seemed to have gone away. The bad news is though that recently the grey cloud that was left has started flashing and seems to have grown... not sure whether this is my imagination but it definately appears more obvious and is hard to ignore. Could this mean that it's going to re-occur? Does anyone know whether the use of a computer is a bad thing if you're a mewds sufferer?
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by Agnes Tan on 09/02/2006

I was diagnosed with MEWDS on 30 August 2006. I am an Asian, 26 years old, currently staying at Singapore. My consultant told me that this syndrome can be cured. In fact, he told me that i will regain my vision in 3 months time. Just wonder is there anyone out there that managed to regain his/her vision in 3 months time? Even though most of you seem to lost your vision in a longer time....I have confident in my consultant, i am sure i will have my vision back in 3 months time. Will keep you all posted...
" Don't worry, be happy"
"God bless.."

+^.^= Love, Agnes
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by MCL on 09/12/2006

I have not actually yet been diagnosed with MEWDS but i have similar symptoms. Not yet blindness (and hopefully not at all!!) but i have had flashing stars in my left eye for the past 12 weeks. It seemed to come on as soon as i gave birth to my first child. I have been having tests galore for the past month but with no official dyagnosis only that it is probably White Dot Syndrome. Could my case not be MEWDS but another form of white dot syndrome?? My blind spot appears to have enlarged but only noticable if i close my right eye. AS i have has this for 12 weeks when is it likely to start getting better? I have had headache and what the doctors say a glue ear which makes me feel lousy - has anyone else experienced this?? Thanks to the person who set up this site as i feel that i am a rare freak with no one to talk to about this who understands
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by olliewallie on 10/19/2006

Hi. I am so glad I found this board, since this is a very scary thing to have happen to you. I am 49 years old and had the "flu" last week starting on Sunday night. I woke up on Wednesday with a blind spot in my left eye. The best I can describe it is as a gray blob, just to the left of my central vision, and when viewed in front of a bright window with my other eye covered has dancing black specks in it; not round like floaters, but oblong specks. I do not have insurance, so an opthalmologist would not see me without cash in hand. I went to the emergency room where they used a Wood lamp and did a chest x-ray and charged me $800 to tell me I had a virus (really??). I then went to an optometrist, who at least could look inside my eye, and he only saw some swelling of my optic disks, worse in the left, affected eye. He thought he saw a small hemorrhage in the affected eye's disk. Did anyone else have this? He did not say it was MEWDS, but he said it should clear up in several weeks or months. I am just wondering if I should pursue this further with an opthalmologist or just wait.
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by BShores on 10/24/2006

Hi,
It's been a few months since I last posted a message on here but I just wanted to say that, aside from the small blind spot I've been left with (where the scar is apparently), my vision has almost completely returned to normal :-) I'm really relieved because I was so scared when this all started. I know it could happen again, and that the only thing I can really do is try and stay fit and healthy, stress less etc. I'm trying to eat loads of immune system-boosting foods too. Hopefully it will all help...
Thanks for listening :-)
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by tduarte8959 on 11/01/2006

I was diagnosed in August 2004 with MEWDS as part of post-viral syndrome after Menengitis. At first I was totally blind in any type of diminished lighting pre-dusk and darker. This went away after about 2 months and my vision gradually got better, not as good as before, but better. I have had 20/20 vision the entire time. I just have no sharp focus and my peripheral is not as good as it was. Bright light still hurts, I always wear sunglasses. Two years have gone by. I have adjusted and things are fine. I know this is not correctable and work with it the best I can. This entire process has been scary, but it gets less scary with time.
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by Nahna2_4 on 11/09/2006

Wow, I am so happy to have found this site! About a month ago I had flashing in my right upper eye that became worse after day 2. Went to ER and from there I have had multiple appointments and tests. MRI, CAT, both were neg of any tumors or disease, thank God and an ERG that showed severe damage to my retina. The Optamology dpt knows me well. My last (hopefully) appointment is on Nov 14, 2006, for one last test where they shoot dye into my veins that then go to my eyes and they take photos. Then the retina specialist will see me. This has been a frightening experience as my husband has MS and is seriously visually impaired. I am the only driver and eyes in our house but since I have been struck with this White Dot Syndrome, which the DRs believe to be MEWDS, I no longer drive, in answer to one of the previous posts. I quit driving 3 days ago when my left eye became attacked. I do not have blindness in the left eye yet, but the right eye has only one small spot at the top inner corner that I see out of anymore. The flashing is nerve racking at times and I cannot see well at all during the day. At night it seems to calm down. This is my 5th week and it is only getting worse. Thank God I still see "around" the flashes in my left eye enough to use the computer. I walked to the PO across the street this morning and as I was leaving I thought the door was open but quickly found that it was a window and ran into it. Needless to say, after jokes of well meaning friends of "the blind leading the blind" I cried all the way home. I am so happy to have my loving husband that understands my feelings to comfort me. He lost his sight at age 21 and he is now 65. Thank all of you for sharing your stories, it truely helps. I, like a few others of you, am a female, and, well past the young women's age limit. I am 55. I feel the need to see as much, read as much and write, write, write before I lose it altogether. I am hopeful that I will be one of the majority of you and will retain all or most of my sight. God bless you all, my prayers are with you!
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by m_ortiz on 11/21/2006

wehew! Im so happy that I found this site, it has changed my life! Im so happy I found people that I can relate to, I thought I was the only person with this weird Shit in my eye. Last year i was diagnosed with MEWDS. What the hell? they dont know what it is, and when is it going to go away. Im walking around in school with lights flashing in my eye and no medical insurance, and my eye doctor told me that it was going to go away in 3 months. Well, is about to be a year and i have mewds on both of my eyes. Does anyone know if im going blind?
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by kiamba on 11/26/2006

this is so relieving to find this site, i am in australia and have had a white/grey spot in my vision for about 6 months since i went through a very stressful time and it seems to be starting again. when i wake up in the morning i see a ball of light with little sparks in it and then throughout the day just a grey spot, when i look at writing with my right eye the writing disappears i went to the opthamologist about this about 5 months ago and he didn't mention anything other than some spots in the back of they eye which he believed had been there for a long time and that they were not active. i have another appointment on thursday so i will see what he says and ask him about mewds, i believe that stress and anxiety can make it worse. p.s i am 36 years and near sighted so i seem to fit the bill i also take 50mg of zoloft daily.
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by freestylecrazzy on 11/29/2006

Is ( APMPPE ) (mewds) and (White Dot Syndrome) the same thing .? i am a male right on my 20birthday
i got this THING call APMPPE.aka White Dot Syndrome
i would love to have a talk with any one that as this ... you can . email me at freestylecrazzy@aim.com. or i.m me at freestylecrazzy ..
Just White Dot Syndrome
Posted by lana on 12/13/2006

Hello,
I just wanted to share my story. I was diagnosed about 10 years ago (early 20's) with White Dot Syndrome. After about 3 days of a little white flashing square was not going away from my left periferal vision. I saw an eye doctor "specialist". He did a few tests and found I had a pretty good size blind spot in the same spot I was seeing the little flashing square. I was not even aware of the blind spot until he pointed it out to me. He concluded by telling me I had White Dot Syndrome and that it was a virus and that it would take a couple of weeks, but would clear up and probably never come back. Well, I have had it come back twice. It always starts the same with the little flashing sqaure of light in my left eye. Then, that seems to calm down and the blind spot sets in for a week or so. And, what's really interesting is in the middle of the night if I open my eyes, I can see a big black spot with what looks like veins wrapped around it in my left eye vision. That's pretty trippy in the middle of the night to see. I never get a headache, but my husband swears I'm having some kind of a migraine. I also never lose any vision in my left eye, thank goodness, with the exception of the blind spot in the periferal vision. So far, it seems to last a couple of weeks and then dissappears. Really unusual. That's why I'm sharing. I would like to know if anyone else has the same symptoms I have.
Thanks for letting me share.
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by missaroo on 12/23/2006

I had MEWDS in 1995 at the age of 26. Mine was in both eyes. It began with extreme headache. When I covered one eye to check my vision I was stunned to realize I had none. I have so much to say in regards to this weird eye disease. My other eye soon followed. My process lasted for ten months. Now I was wondering if anyone else has been diagnosed with any autoimmune disease? Thankyou! my email is tykytj@hotmail.com
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by tralee on 01/08/2007

To Lana on 12/13, I have EXACTLY the same symptoms as you. I have had it come back twice since I was diagnosed in 2005. Pretty scary when it comes back and this time it seems to be lasting longer.
You're not the only one with this...
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by ajmuncy on 01/10/2007

I was diagnosed with mewds in 1998. It was always in my left eye, but now has started in the right, at the same time I developed flu like symptoms, sore throat, fever, etc. I also have neurological celiac disease and thyroid disease ( both autoimmune). When I was a toddler I had polio. I know most doctors say mewds with go away on its own but it has never cleared up in my left eye for almost 10 years now. If it persists in the right, I am doomed. How will I work and function? Where are the doctors with all this wonderful technology??
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by maxkill1212 on 01/25/2007

Ok, here's my story. I'd appreciate it if someone could tell me if I'm on my way to serious eyes problems or not.

According to the documentation on MEWDS, I'm not the usual case. I'm a 16 years old teenage and I'm male.

I started to notice uncountable white dots in my vision about 5-6 weeks ago. Both eyes. I don't really have any symptoms listed in the cases below, or maybe light headaches.
When I'm outside, or in a very light-colored room, the dots don't seem to be present, but they are most noticable in the dark, or dark plain surfaces.

Are there any treatments and/or medication available?
If not, how much time should it last?
Thanks for your help.
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by longrider on 02/07/2007

Our son, 14 y/o, was diagnosed with MEWDS last week after two eye specialists had apparently misdiagnosed him with Stargardt's. He has one large central gray spot and two peripheral smaller spots in his left eye. We were told at the Retina Institute that it should clear in a couple of weeks.
During his visit, the physician ordered several rounds of photos to use in a new diagnostic procedures textbook that she and several other eye doctors were writing about MEWDS.
Thanks to all for posting your histories. It helps to have some support and info in laymen's terms.
Barry
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by jameskid on 02/20/2007

ATTN maxkill. i have the exact same symtoms as you... i see all kinds of white spots that arent possible too count. no head aches no nothing. when im doing something or in a room with lots of things its harder to notice.. but on a blank sky or wall its really harsh.. this has been going on for 2 years now ive been to all these doctor and had all these blood tests. im scared and dont know what to do, if you got any info hit me up on aim, my screen name is ieatlucas
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by Jane11 on 02/26/2007

I'm not really sure if this is MEWDS or what it is I am seeing but recently I noticed that when I look at the bright sky or snow, i see very small 'dots' that are there for a second then gone, repeatedly. I guess I call it small sparkles that zoom around. I don't know if this is ... normal? Does it have anything to do with why I can not see pure darkness, but a kind of 'snow' like you see on a TV channel thats not working (but not to that extent) Its more of a kind of shimmering 'thing'. Sorry, its difficult to describe, but any help would be so appreciated. Just a point in the right direction, even.
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by olafgypsy on 05/02/2007

I was just diagnosed with MEWDS yesterday. I first noticed what looked like the effects of a flashbulb in my right eye -- sort of iridescent dark blue / green / yellow in color -- except that they never faded and their number kept increasing. I had normal visual acuity and visual field tests, but the optometerist noticed slight swelling in the optic nerve, so he referred me to an opthalmologist.

The opthalmologist became very excited when he realized what it was -- since it's so rare it's unlikely that he will see it again in his career -- and he took hundreds of different kinds of pictures of my retina. He wants to present at a conference about it.

I am a 24-yr-old female "textbook case." I am just relieved, because when I heard that I had slight optic neuritis I immediately thought brain tumor, lupus, or MS. It's just annoying, and I hope it goes away soon. I also hope that the "subclinical" level of MEWDS the doctor found in my left eye does not become clinical, because then I would really be visually impaired.
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by pmack on 06/08/2007

I am 37 and healthy, but under a tremendous amount of stress. I noticed about three weeks ago that I had a grey blind spot in one eye. It grew slightly and I noticed a second spot around the blind spot. Now it seems to have leveled out. It is worse out in the sun, but in dim light I can see through the spot somewhat. In the pitch black, I get a colorful lightshow in the area of the blind spot. I have had an MRI, various retinal tests, including dye angiogram, blood tests for autoimmune and infectious diseases and everything is normal, except that I might have tested postitive for Lyme disease (the tests are very inconclusive and there are a lot of false positives). I had one singular white spot of inflammation on my retina that was quite noticable, which doesn't exactly fit MEWDS. The retinal specialist thinks I have either MEWDS, Azoor or idiopathic blind spot enlargement and says that they might all be the same disease presented differently. Sounds like no one is really sure about these diseases. I am seeing an neuro-opthamologist next week to rule out a neurological problem, such as non-arteritic anterior ischemic optic neuropathy (also a possibility) It seems like you cannot diagnosis these diseases without ruling out everything else first. It is very frightening as I am a very active outdoor person and a lawyer by trade. Blindness would definitely change my life forever. I can't help but wonder if there is a relationship between my stress levels and the onset of this disease -whatever it is. I know that a few days before, I drove in a sleetstorm at night in a mini Cooper with huge trucks flying by me and construction on the road. My car was hydroplaning into the other lanes and I was truly scared for my life. It is the only "event" I can relate to the visual disturbances. The doctors have had such trouble diagnosing me that I've starting going in for accupuncture. No luck there either. Thanks for reading.
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by greta on 06/12/2007

i would love to get feedback from you guys about whether this sounds like anything you are experiencing. i have been having these symptoms since 1999 and have not been diagnosed with anything at all. in fact, the doctors have found nothing to explain my symptoms. mewds has never been mentioned to me, but it sounds the closest to what i am experiencing.
the things that don't really match, i guess, are the timeframe (eight years) and the fact i am not myopic.

anyway, i have had about 20 episodes of this, the latest of which is occurring right now. i get (in one eye only, though it occurs in both) what looks like the afterimage of a flashbulb, kind of a bright area like you've looked at a light. this then becomes a kind of grey spot, that intensifies when i blink or close one eye. over a period of a few weeks or a month, this fades to a smallish permanent scotoma.

sound familiar or am i (still) barkling up the wrong tree?
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by CastawayMG on 06/14/2007

Hi, i've thought about it for some time and I think that everyone here must have something in common.

I live a VERY strict life, I hate change, so i'm going to post about me and alot of things that I do to see if anyone does any of the same things that I do.

I am on the computer about 12 hours a day (atleast)
I drink tons of mountain dew
I'm a meat and potatoes kind of girl
Only vegetable i eat is green beans.
I went swimming the day before I lost my vision in my left eye.
I wear contacts
I live in Arizona, a very hot state (does anyone else)
Because since i've had this, the sun has a really bad affect on my eyes when I go outside I get bright sparkles in my eye that has the white dot syndrome.
I'm 25 years old.
I'm very caucasion
I have green eyes
This basically sums up my whole being, does anyone else do any of these things.. because there has to be some kind of common factor between us all.
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by AnnQ on 06/21/2007

I was diagnosed with MEWDS in April (3 months ago) and it got better fairly quickly - but now it seems to perhaps be coming back. Yuck. This is such a drag.

Anyhow, when I was diagnosed I went to see a Tibetan herbal doctor in NYC (at the Meridian Medical Clinic) as I thought it couldn't hurt. Well, he didn't think it was a big deal and said I would get better fast - which I did. Then I got lazy about taking the Tibetan medicine and it seems to be returning (but not nearly as bad, just a persistant blind spot). I have started taking his medicine again (it's herbal). I would suggest giving alternative medicine a try since Western medicine doesn't have much of a clue.

The Tibetan doctor: http://www.meridianmedical.org/contact_us.html

Not sure if anyone is interested, but it did seem to help me. My opthamologist was amazed at how quickly I got better. I'm hoping all the residuals that I still have and the weird sparklies I see when I go into bright light will disappear.

Feel free to contact me if you have questions about going to the Tibetan doctor. ann10q@yahoo.com
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by pmack on 06/27/2007

In response to Castaway MG and her comment about how there has to be something similar between us all. I've had the same thoughts. Just for fun (?) here are my stats:

37
redhead
Very caucasion
Blue/green eyes
Pretty athletic
Healthy eater - omnivore
Don't smoke
Drink wine and beer fairly regularly
Sit at a computer all day long
Have been reading all my life
Live at higher altitude
Live in a pretty urban environment
Compulsive sunglass wearer (lost them for a week right before this happened)
Decent visual acuity, no glasses (before this happened)
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by jillyvet on 06/29/2007

27 y. o.
blonde
blue eyes
live at hot, humid sea level but raised in high altitude desert
fairly active
healthy eating, mostly veggies
drink very rarely
little computer time (5 hours a week)
active, high stress job (emergency veterinarian)
lots of allergies
Mine started during a time of high stress (favorite pet died, planning wedding and dad diagnosed with cancer all the same month). My retinal specialist said mine was the largest lesion he's seen and caused a permanent scar in my central field of vision. The bright lights seem to recur when I get really stressed.
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by susan hope on 07/02/2007

Hi im susan from the uk (41 years young)
I have just been given a diagnosis of MEWDS after over 10 years of unidentified eye problems. It first started after a virus when I looked at the sky an area in one eye was stained yellow and lines began to bend, this came along with sparkles, blurryness and some days were clearer than others. On going to the hospital I was told I had a CNV a tear in the back of my eye caused by a virus or being short sighted. This has only just be put down to MEWDS now I have permenant scarring and bad central vision. I have had some flare ups but they have not caused too much damage, It is when I am ill or stressed and I get more sparkles and patches some of which get better and some dont.
It is nice to know I am not alone as I have been given incorrect diagnosis many times and have been very depressed and felt like giving up.
I live every day with the sight I have I work and enjoy all the things I did before but have to make allowances. Just to say like others in the dark I see a dark patch with flashing veins freaky but entertaining when you cant sleep.

Keep happy and positive I would love to hear from others on susan.dobson90@ntlworld.com. we are a small group and the medical proffession seem to know little so it is up to us.
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by kasuchan on 07/02/2007

Hi
I am 20
Blue green eyes
Reddish brown hair
Pale (I look like a china doll when done up its sad really)
Tall for a woman
I live in the town I was born in� it�s a warm place most of the time
As active as one can be living in a dorm
Don�t drink
Don�t smoke
Anemic meat eater (though veggies are lovely)
Normally stressed for my major

and confused and the doctor isn't talking which is not helpful. I woke up one morning and couldn't see out of my right eye well. I thought it was a migraine and turned off the lights etc. and thought it would go away, but I noticed the large warping dot wasn�t going anywhere. I went to the eye doctor�s and after being referred I was sent to a specialist who said I had white spot syndrome which I found to be a shrimp disease on Google and decided after reading your posts I must have heard him incorrectly.

You all are saying you are affected and its been years, I was told he thinks 3 months and I will be fine eh thought, but my "cloud" is behaving differently than the "6 categories� of this syndrome and� there have been lots of tests but no answers. Do you all have any? Oh symptoms large gray spot only one in the macula region (exactly left to the center of my vision) they said it looked like AMPHEES whatever that is but I am not blind in both eyes so it can�t be. So I am now the interesting lab rat that they must constantly take pictures of in color and black and white and receiving no answers.

I am studying music and it scares me that I may never be able to see it clearly again. I wasn�t sick before hand, I am not diabetic, I am no more stressed out than any other music education major and they aren�t having eye problems (except professor Clegg and that�s different� he is blind) so I am at a loss.
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by AnnQ on 07/03/2007

It's interesting to hear about people's lives. I have to say that my MEWDS is almost not there. It did seem to "go away" - my doctor asked me to go back in a couple of months as he says I am still in the "healing phase". I find when I step out into bright sunlight I have sparkles and there is a "blind spot" that I can see through but it still obscures things a tiny bit. It's all in my left eye only. If my eye stays like this forever it's fine with me, I feel like I see normal - but then I can't remember what it was like before!

When I saw the Tibetan doctor he said I was anemic and told me to eat a lot more dark green veggies. He said I was nursing and that was taking a lot out of me. I have to admit that I have had a lot more energy now that I'm eating so many veggies.

About me:

41 y.o.
green eyes
light hair
thin
engineer
eat very healthy
excersize
have a 9 month old baby girl

Since this happened I have been volunteering at Reading for the Blind and Dyslexic - it has made me appreciate every moment of sight!
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by mhidalgo on 07/05/2007

I just recently began looking for a doctor I could go to for MEWDS. I was diagnosed with MEWDS (later on the doctor said it was MEWDS with a possible crossover of AMN?) about 14 years ago at Manhatten Eye Ear Throat hospital. I was then told that it is unknown as to what causes it, how long I will have it for and that there is no known 'cure'. They sent me to Cornell to have the doctors there look at my eye because MEWDS was very rare and most only get to see in viea textbook.

I also have had Lasix surgery to correct my minus 8 1/2 and minus 9 vision. The corrected vision lasted for approximately a year and a half. My eyes have now been digressing for the last 3 or so years and I am back to contacts and glasses.

Related? I don't know. However now that I am 40, I have noticed large floaters that are becoming quite annoying. With the eye doctors that I have seen (on Long Island) none were familiar with MEWDS. I am probably going to have to go back into Manhatten to find a doctor to look at my eyes again so I can get an update of where I stand. Sure I am nervous about my eyesight for the future. Any suggestions or comments would be most welcome.
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by CastawayMG on 07/13/2007

sorry I haven't posted in awhile. Thanks for all the response. I also have reddish brown hair and light green eyes. I live in a hot dry climate. These seems to be a commmon factor among the MEWDs population with some exception.
Does anyone have any thoughts about something positive that we can do as a group to let the people know who are researching this disease that there are in fact some common factors. Any response will be appreciated. I will check the board daily.
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by AnnQ on 07/14/2007

To mhidalgo:

My doctor in Princeton (Dr. Grabowski) says that he sees a MEWDS case about every 3 or 4 years. He says that they clear up on their own and he doesn't see the patients ever again so he assumes they don't get a relapse. He said the journals articles he's read point to no relapse.

Therefore, if you are getting big floaters they may be just that - big floaters. It seems like a good eye doctor could diagnose that? Dr. Grabowski is a retinal specialist and I've found him helpful and competent. I'm not sure how far he is from Long Island but he is at Outlook Eyecare and his phone number is 609 419-1920. He also has an office in Monroe Twp. NJ. He really made a huge effort to see me fast when this happened to me and was great.

Good luck, if you have any questions my email is analisq@gmail.com
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by TGoodacre on 07/14/2007

This is so bizarre! I have the exact same symptoms as every one else, so I won't get in to much detail, but because this is such a weird disease, I'm just not comfortable with the little we know about it. Therefore, I'm including my information below as well.

(the biggest similarities I've found have been the obvious, age and sex. I have also found a few of you either read, or use the computer on a regular basis. The last thing that I found to be strange is that a great deal of you seem to be overly stressed, as am I)

I'm a 27yr. old female
smoker, but have made many attempts to quit
drink rarely
History of Migraines
I am on Adderal XR for ADHD
not the healthiest eater, but I try
use little caffeine, stick to ice water
3 small children
very stressed out
about 4 to eight hours of computer use a day
recently went back to school and started reading much more then usual

I would like to know if any one else is taking the medication that I am. I know this sounds really weird, but I was also wondering if any one else here has ever experimented with LSD in their teenage years. I remember hearing an old wise tale that LSD or "acid" stays in your body forever, and could cause vision problems years down the road. Unfortunately, I did use the drug on more then one occasion, but that was over 10 years ago.

Good luck to every one that is joining me in this extremely annoying venture. Maybe we can figure this thing out if enough of us share our ideas, regardless of how insignificant you think they may be.
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by Susiegr on 07/18/2007

Hi! I just want to echo what many of the others have said... it's really nice to know that I am not alone! TGoodacre, FYI... I take Adderall XR.

I was diagnosed with MEWDS yesterday. My episode started on Sunday with no identifiable preceding incident (other than high stress). Mid-day I noticed a square "strobe light" flashing in the periphery of my left eye. When I got to work on Monday, I noticed a blind spot about the same size and in the same location. With thoughts of detaching retinas dancing in my head, I immediately called my doc who was out of town. I made an appointment with another doctor and spent 5 hours being poked and prodded. I left the office with no answers, an appointment for Tuesday for more tests that would be "even more uncomfortable" than the ones we had done, and the impression from him that I would most likely end up blind in both eyes.

Fortunately, my regular ophthalmologist returned Tuesday, and after less than one hour, and several non-invasive tests on his computer-based systems, I had a diagnosis. All I will say is, make sure that the doctor you see has the newest technology. It makes a world of difference! The prognosis I received was the same as many of you...3 months from now, without any treatment, it should be gone with very limited permanent damage. I have an appointment to see him for a follow-up in 2 weeks, and I am to call if anything changes.

One thing that he said that I don't think I read on this message board was that whether you have permanent damage depends largely on the amount of inflammation you have (which is why steroids are sometimes indicated), and the location of the dots...if there are a lot near the optic nerve, it is more likely to cause more damage.

Like many of you, in addition to an enlarged blind spot that I had on Monday, I now have numerous small spots that are further obscuring my vision. In my short experience, I have noticed that fluorescent lights are a disaster! When I am outside or at home (with normal incandescent light), I don't notice the dots, but in the office with the harsh lights, they glow with a gray light, and severely disrupt my vision. Has anyone else experienced this?

The bio:

38 y.o Caucasian female
brown hair and eyes
Astigmatism in each eye, but together 20/20 vision
Work in NYC and live in the suburbs
Work in finance, spend days and many evenings reading and staring at a computer, and my job tends to be extremely stressful
I am closing on my first home in 5 days, and my mother was just diagnosed (last week) with breast cancer (fortunately her prognosis is very good)
Adderall XR for ADD (as opposed to ADHD)
Don't drink much (anymore)
Quit smoking over a year and half ago
No migraines (thank goodness)
Pretty bad allergies (made worse by my two cats)
Though I try, I'm not the healthiest eater
Exercise fairly regularly
Reasonably fit

Best of luck to you all, and for those of you that made it through my lengthy post, thanks for taking the time to read it!
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by TGoodacre on 07/22/2007

Susiegr - If you don't mind me asking, how long have you been on the medication, and how many MG's do you take a day? The reason I ask is because I'm on, what feels to be, a fairly large dose. I take 30MG two times a day. My doc. upped the dose about a year ago, and I have been experiencing many unpleasant side effects since. (I've also made many unsuccessful attempts to get off of it as well)

Because this disease is so rare, I think this coincidence is definitely something to look into further. I would like to know if anyone one is currently conducting M.E.W.D.S. research. All though the specialist I see is wonderful, I got the impression that learning more about the disease isn't at the top of anyone�s list. This has probably been the most frustrating part of the whole ordeal.

This site is the only thing that has given me a scenes of hope, so if any one out there has any questions, concerns, advice, or information they would like to share, please feel free to e-mail me at any time � tgoodacre@new.rr.com
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by pmuppirala on 08/21/2007

I am new to this group. Wanted to see if anyone has been going through some treatment for APMPPE. I am a 38 old Male with Asian-Indian origin. Last year I suddenly developed some blurred vision in my left-eye and after a few weeks got it checked with a retina specialist. After Angiogram etc he concluded it could be APMPPE and put me on Predforte eye drops. December I had a mild heart-attack and had to be stented. I started eating healthy, changed jobs to reduce stress etc. It seemed that the left eye vision improved.

Suddenly two weeks back my right eye got significantly blurred and I went back to the specialist. This time the central vision of the right eye is effected. He put me on oral corticosteroids and asked me to check back in 3 weeks.

I used to Smoke before my heart attack.
I had high cholestrol and am on medications(Crestor, Niaspan)
Now with heart condition although minimal damage am no other medications.
I am not diabetic or don't have High blood pressure.
Lyme tests, Hepatitiis tests all were negative
TB test was positive since I had BCG vaccination when I was young.

I don't know if it improves in due course.

I have quick questions?
Does past smoking effect.. current APMPPE diagnosis?
Does any cholestrol medication effect APMPPE?
How to be sure that it is APMPPE and not another version similar condiitions.
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by ashleybates on 09/07/2007

I am 36 yr old female who was initally diagnosed with AMPPE in March, but later was diagnosed with ARPE, (another white dot syndrome) which only affects one eye. I woke up one Tuesday morning and had loss of central vision in my left eye. I went to the eye doctor & he got me an appointment with a retinal sppecialist on Friday. He actually thought it was central serrous retinopathy which is caused by stress, but the retinal specialist diagnosed it as AMPPE and said it should improve within weeks or months. He told me to check back in a couple of weeks. That weekend it got worse and by Monday morning my vision was 20/400 when I went back in and saw another retinal specialist in his group. They immediately started me on 60 mg/day of prednisone and titrated it down over a course of five weeks(I went back every week to see if there was any improvement). They also performed a flourosein angiogram and had me tested for ms, lupus, ALS, & rheumatoid arthritis, as well as sent me for a MRI (with dye). Thankfully, all tests were negative. However, I learned my condition in my eye not only affected my macula, but also involved the fovea which is basically the most delicate and important part of the eye. It was described to me as the part of the eye that "takes the picture". It is the absolute worst place to get a white dot lesion and recovery is slim when you have foveal involvement. I was then sent to a specialist who sub-specializes in "white dot syndromes" and he diagnosed me with ARPE (acute retinal pigmented epithelopathy) and said the good news is that my right eye will not be affected and the bad news is that I will not get my vision back in my left eye because of the permanet scarring in the fovea area. I have perepheral vision, but very little to no central vision. Also, I have a constant strobe light in that eye as well as a large gray scotoma. They say the strobe light should fade eventually. Looking back, I wonder what would have happened if I had not waited until friday to see the retinal specialist and if I had been given the prednisone immediately instead of waiting until my condition worsened. However, the benefit of the prednisone is controversial
versus potential risks. It has also been suggested that use of chemo drugs can also help when the fovea is involved, but I never received those either. By the time I was sent to the sub-specialist, it was too late and the damage was already done. In my case hindsight is 20/20 (literally). I have two toddlers and cannot imagine not being able to watch them grow up. Although I wish I had my vision back in my left eye, I am thankful that my right eye was not affected, as I was initally told it would be. I am 100% functional, although my depth perception is a little off. My only advice to anyone suffering this is to be aggressive and seek medical attention immediately and ask for all possible tests to be run to see if the fovea is involved.
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by For Kids on 09/12/2007

I am a 39 year old female in the Phoenix Arizona area.

I have had three "episodes", the last beginning last night. My journey started four years ago with total blindness in left eye - diagnosis after 6 weeks, optic neritus. Treatment - none due to length of time from onset. Recovered fully after 3 months. Went through the whole battery of MS tests - SCARY business. Was told optic neuritis rarely reaccures and another episode would likely mean definete MS.

Second episode 18 months later, blind spot center of left eye. Immediate trip to neuroligist and opthamologist. Same diagnosis, treated with IV steroids (NASTY NASTY NASTY stuff). Mostly recovered after 6 days. Side effects of predison lasted for months. Clean bill of health on MS side. Docs said I'm an anomoly, should never happen again...

Third impending episode this past Feb - immediately hospitialized and treated with those terrible, horrible, NASTY steroids again. Symptom free in 2 weeks. Side effects of steroids lasted 4 months. No MS - good news.

Requested referral to the MAYO clinic. If it isn't MS, what is it? Devics desease is similar to MS. Spent 4 days at Mayo having every test known to man done (MRI, with and without contrast; Spinal Tap; nerve response; visual evoke; visual field; tons of blood work) Diagnosis "It isn't neurological. Come back if you have additional episode." I was SO frustrated at that point I didn't know what to do.

Last night, 7:00 pm, switched from TV to computer screen and there was the spot again. Called Mayo at 8:00 am this morning in tears. Was seen at 3:00 this afternoon. Opthamologist, Retna Specialist, Technician and Nurse all stayed until 6:00 pm to complete tests on me. Retna Specialist believes MEWDS is most logical diagnosis. Ordered another battery of labs and will see me again in two weeks.

RIght now I am singing because it looks like I have an answer, after all these years of symptoms and no answers.

I told my husband last night that I will never, ever do the steroid treatment again. My vision has always come back 100%, and I am willing to wait. The doctor I am seeing seems to think there are other treatments, if I am worse in 2 weeks when I go back.

Bottom line - the Mayo Clinic is the place to be as far as I am concerned and did I mention - the steroids SUCK!

39 White, Female
Drink lots of diet coke
Eat somewhat unhealthy
Chronically anemic even though I eat plenty of meat and vegis and take suplements(this seems to be on a lot of your postings)
High stress job and family
Got back on my bike for 8 miles last weekend after 10 months off
Diagnosis with Fibromialga 3 months ago
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by Di Di on 09/25/2007

Hello All,

I searched a few years ago for information about MEWDS when I was suffering from a bout, but I found little then. I am so glad to find this message board.

I noticed during the months (maybe 3 or 4) leading up to my 4 month long bout with MEWDS that it was as though someone had put a dimmer on one of my eyes. I could tell a distinct difference between the amount of light getting into the effect eye versus the uneffected eye. I also had a very strange episode where I woke in the middle of one night, again prior to a full blown outbreak of MEWDS, and I was completely blind in my left eye (the affected eye). This lasted for 30 seconds or so, long enought to have left my memory indeliably stamped with the fear of the moment. I had not had an episode like that before or since. Just thought it strange to occur while I was becoming symptomatic with MEWDS.

I finally woke one morning after months of noticing a dimming in my left eye to blurred vision. I will not bore you with the details of doctors visits etc. Suffice it to say, that I was diagnosed with MEWDS a couple of weeks later. My vision got worse of the next month or two and then slowly cleared.

I was given no medication for the condition. I juiced carrots and apples (a great drink!!) and I swear this helped a great deal. I believe this condition came on very slowly as it also cleared very slowly. I was still noticing changes in my vision (for the better) a year later. I am now 3 years away from when it first came on and I have no lasting side effects that I can tell.

However, I have recently been told that my ANA is up. This is a marker in the blood that indicates that my immune system is hyperactive. This is the marker they look for when diagnosing Lupus, Sjogrens or numerous other auto-immune disorders. This could also be a marker indicating that there is a virus at work in your system. I am symptom free of any auto-immune condition and wonder if MEWDS or the virus they think causes MEWDS has anything to do with my ANA???

56 years old
live in the Midwest
on a computer at least 7 hours a day
no medications
no children.
relatively stress free.
I eat very health...plenty of fruits and vegetables.
I am slim and get plenty of exercise.
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by CaliGurrl82 on 10/08/2007

Hello all. I am a 25 year old African American woman that was diagnosed with MEWDS about 3-4 weeks ago. Went to an optometrist first, but was then referred to a retinal specialist. he took tons on pix of both of my eyes (only my right eye was affected). I was diagnosed about 3 weeks ago, and just had my follow-up appt. today and all is well. o by the way, the specialist mentioned that the cause of the white dots could be a viral infection (i.e. syphillis).

here are my stats:
live in northern california
25 female
student after taking 4 years off from school
right before onset of MEWDS, ran for about 15 mins./day on treadmill after never really running before (used other cardio equipment)
don't really eat healthy food daily
almost daily weed smoker (yikes!!)
under a bit of stress
just moved back to parents' house after years of living on my own
drink alcohol only occassionally (maybe once a week, if even that)
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by KAGGIEM on 10/12/2007

HI I HAVE BEEN HAVING PROBLEMS WITH MY EYESIGHT FOR THE PAST FEW MONTHS INCLUDING DETERIORATION IN VISION AND SOME SHIMMERING OF VISION, NOT DIAGNOSED AS MEWDS, HOWEVER DOING RESEARCH I HAVE FOUND THAT ASPARTAME IE THE DIET SWEETNER CAUSES LOADS OF PROBLEMS WITH VISION FOR PEOPLE, SO IF YOU DRINK DIET COKE OR USE EQUAL ETC THEN THINK ABOUT REMOVING IT FROM YOUR DIET. IT ALSO CAUSES NEUROLOGICAL PROBLEMS.
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by LE on 10/22/2007

Hi all - I was diagnosed with MEWDs 6 years ago, when I was 34. I had bright spots and flashing and blurry vision in a few parts of my field in my right eye. I feel fortunate that it was only MEWDs! I have some permanent blurriness, and my eye doctor can always see the scarring on my retina. But it really doesn't interfere with my reading and driving. The odd thing is, the doctor told me it was self-limiting and would never return, but every 6 months or so, when I felt a little sick, I would get a slight recurrence, sometimes with the flashing lights. I think of it like a virus that's always in me, but not very harmful. It came about the same week that I had experienced a hearing problem in my right ear, which became permanent tinnitus (although not very serious), so I've always wondered if the two were connected. I am near-sighted and wear contacts. Best of luck to you all.
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by raerae on 11/20/2007

i am a 24 yr old aboriginal canadian and going to university i was just diagnosed last week thursday trying to play basketball and this shit is scaring the hell out of me i hope my vision gets better SO SCARED i love playing sports was anyone seriously effected like could not participate or anything?

24 yrs old
work out consistently
7months quit smokin pot used to smoke daily
completely stressed
trippin out
prayin 4 the best
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by ChrisOz on 12/25/2007

I cannot believe how many people have these conditions!
I was diagnosed with AZOOR (but symptoms fit those with MEWDS etc) about 5 years ago. I have yet to hear of anyone who was cured and am interested to know if anyone has gone on to develop any other health problems that their diagnosis may have been a pre curser to.

I am 46 , female, mother of 3
dark hair,fair skin blue/green eyes
Live in Sydney , Australia - notorious for asthma and allergies
Diagnosis followed a prolonged bout of sinusitis/glue ear - given many antibiotics and nasal/eye sprays at the time.
I have had 2 recurrences - the latest causing my blind spot to enlarge(in peripheral vision of left eye)
Both recurrences were in pre summer or end of spring(allergy season) - also stress season!
I have amalgum/mercury fillings
I don't look after myself enough - a bit overweight and little to no exercise.
Don't smoke, social drinking only
Avoid artificial sugars
Have always had borderline low iron levels but NOT vegetarean
anxiety type personality - stress easily
Possible gluten intolerance and yeast sensitivity

We have to get to the bottom of what is causing this! I believe mine has been there longer than realised. The flashing lights and blind spots is only in the past few years but up to 30 years ago I had a blurry feeling in the affected eye (doctors could see nothing wrong and gave me eye exercisesa). I always felt that was related to my sinuses as I have always had trouble nose breathing. I AM SICK OF NOT KNOWING!
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by Debby on 01/08/2008

I have just been diagnosed with MEWDS and want to talk with people about this. I am middleaged, though. It is funny to say that I am middleaged, because i certainly don't feel it. I experienced it in November and have just seen a neuro ophthomologist who is referring me to a retna specialist.
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by Debby on 01/08/2008

I cut my conversation short to see if it would show up and it did.
I am 53 and am surprised by what is going on. I never heard of this disease until today. It has affected my right eye only. I am very very nearsighted. This is all very odd to me and I guess I am glad we are in the age of emails to be able to talk to people all over.
I am going to a retna specialist to have the disease confirmned.
Thanks for listening.
Deb
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by nikki112976 on 01/24/2008

I was diagnosed with white dot in August 07- I have seen all the specialists in my area and have traveled to Cleveland Clinic twice-
My story- one morning I woke up and noticed my central vision was gone in my right eye- I could not read the eye chart at all only fingers in front of my face- I was put on 60mg of prednisone a day- for 4 months!!!!- I gained weight, was bloated, was miserable and now have to work on fixing my marriage due to all the mental strain of my aggression this mediation caused!!!!
I am now on 10mg of methrexate a week. Has anyone else out there been given it? Does it work? I have been on it about two months the side effects aren't as bad- except for thinning hair and possible liver kidney disease. And the big kicker is that you cannot get pregnant on this stuff. My husband and I really wanted to start a family soon.
At my appoinment last week my vision has gotten better 20/100- not amazing but ok- I was told that I most likely won't have my vision back to the way I started. I just really want to know is all this medication helping or is my body just healing itself? I am seriously considering not taking the meds to see what happens-

bio
31 years old
white female
average height and weight
medium- high stress job
fairly active
no health issues up until this point
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by khuse on 02/06/2008

I was just diagnosed with this condition yesterday by a retina specialist. I actually laughed when I heard what it was called -- it sounds too much like something I've made up -- but the symptoms are certainly real enough. I was warned in the past by my eye doctor to pay attention to any large floaters or flashes due to some retinal degredation, so when I experienced that "strobe light" effect with sparkles, I was pretty sure that I was in trouble. It was replaced within 10 minutes by a greyish fog, so I called for an eye appt right away. I was sent directly from there to the specialist. He told me that it was more common among women, and that it seems to be triggered by a viral infection (I had a wretched head cold when the sparkles happened). He also said that it usually self-corrects over time, but I have a 3-month check up just to be sure.
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by Laurieinwa on 02/09/2008

I was just recently diagnosed with AIBSE (Big Blind Spot) after having thought i had optic neuritis for the past 9 months. mfERG and mfVEP testing confirmed the AIBSE diagnosis. I would sure love to correspond with some of you who have the same thing. IT is a bit disconcerting to hear the opthalmologist/neurologist say, "you have this...we don't know why you got it, we don't have anything to cure it with, help it, you either get better, worse or stay the same. See you in 6months" I have it in both eyes. My right eye has the blind spot that presented one day last May, got worse over a week, now 9 months later is slightly better, still have the flashing lights. My left eye we weren't sure i had it in that eye until the testing, shows three blind spots but i only have gray haze in that eye not seeing the blind spots myself.

I was perfectly healthy before the onset of this, for at least three months, as was all my family. No allergies that i know of.

I did have two lesions on my MRI and am having balance problems right now, plus one doctor says i also have something wrong with the optic nerve in one eye but it is not optic neuritis or glacoma.

would love someone who has this to correspond with
bumboandpunky@aol.com
i am 45 and married with 8 children
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by jerrecksmom on 02/13/2008

I was about 19 when first diagnosed with MEWDS. It was the scariest thing, practically loosing sight in my right eye with no explaination. After multiple visits to various eye doctors and still no answer, I was finally diagnosed about 5 weeks after the symptoms began. At that time I was told there is no cure, but that all would go away in about 6 weeks. To my surprise, it eventually did!! I regained all vision in my eye, with the exception of ocasionally flashing white "dots" that don't really affect my vision though I am always aware of them. The thing is, after 10 years, I'm now having similar symptoms in my left eye and i'm begining to wonder if I will be going through this whole process again....

Because MEWDS is SOOOO rare, it's hard to find info anywhere and I'm so glad to have found a place with those who understand what I've been through. It's great to know I'm NOT the only one.....
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by cjdono on 02/20/2008

I was just diagnosed with MEWDS yesterday after going thru all the pics and blood tests, my specialist is supposed to be the best but he had to cunsult a professor at NW for a consult. He has not treated or had a case in his practice.

I thought I was imagining at first..... first day I had a migraine,which I never have had then the lights started flashing, black spots and the sometimes constant kalediscope swirls. its one or the other all the time!

stress related? Probably

how long have you had the symptoms and does it spread to the other eye, my doc said only a 1% chance. Kind of think he keeps having me come back to take pics to put in his journal. How often do you go for visits?

any info would be appreciated.
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by kfoster26 on 02/20/2008

I am a 29 year old female. In March 2003 I was diagnosed with having MEWDS. I was working in healthcare and was required by my employer to have the Hep B vaccine. (Alot of the stuff I have found about this disease is liked to this vaccine.) I was told that there was no cure for MEWDS and that it should clear up on its own.
In 2003, when i was first diagnosed, I had only loss 40% of the vision in my right eye. Now, I am up to 70-75% of vision loss in this eye. I get the most horrible migranes one will ever have... lasting anywhere from 8 hrs to 3 days. My vision in my left eye is 20/ 25 where as the vision in my right eye is 20/200. I have learned to adapt to this and I do not consider it a disability. I am currently in school to become a nurse. My only concern is the vision of my left eye getting bad from having to rely on it to do all of my seeing.
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by TGoodacre on 03/19/2008

For those of you who are completely freaking out, I was in your shoes about 7 months ago. I was just cleaning up some of my bookmarks and came across this sight again.

I just want those of you who are panicking to know that it does clear up. It took me about a month, and I had complete vision back in both eyes. After a week or so it became more annoying then anything, and then it ended up clearing up. It was a slow healing process though. (so slow that I couldn't figure out if it was really gone, or if I was just that use to it)

I know how frustrating it is to have something that no one knows the cause, and I really thought I figured it out because there was another woman that was on the same medication that I was, so I figured that had to be it. Personally, I don't think that we will ever really know the specific cause because I have a gut feeling that it is just a really weird, and rare virus that woman, particularly in our age group, are more susceptible to.

I always hate reading the really long ones, especially with a messed up eye, so I hope that I have helped.
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by Deb05 on 04/07/2008

Hi I am looking for some one who would like to converse about this diases throuh email also. I was diagnosed with Azoor in 2006 in my left eye. I have lost they site to a 24=7 strob light and a snow strom. To this last winter having the flashing and a blind sport in my left eye know. Which my doctor at the U of M say could be Mewds and or the beginning of Azoor in my left eye. Their is a doctor in Spain who has wriitten some papers on this with the treatment of a anti fungal drug called Vfend. Has anyone been treated with this. Willing to try anything at this point. If we cant
find something to stop or slow this d own I figure I have less than a yr if the rest goes the same as the right eye did. MY email address is dsalic@bevcomm.net. Would love to chat with someone with the same things going on
Deb
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by Skui on 04/25/2008

I developed MEWDS last year, as diagnosed by a retinal specialist. He said it would go away in a few weeks. It never went away and only got worse, but I'm still hoping. I'm 54 and have brown hair and brown eyes. I work at the computer for 12 or more hours a day. I'm wondering if that is a common factor. Someone said they were given fungal medicine for it, and I'm wondering if it could have something to do with a fungus--that idea had crossed my mind when I was trying to think of possible causes. I also had taken LSD when I was young and some of the sparkles or whatever you want to call them are reminiscent of some vision things I experienced while under the influence of the drug, though I never had the blurriness or clouding then that I have now. Mine is always worse when I first wake up--in fact, that's how it started. I woke up one morning and couldn't see very well out of my eye. That's still the case, but it doesn't clear up as much afterwards as it used to. I had been going to a dry sauna around the time I developed it, but I never got dehydrated.
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by Hoffy on 05/17/2008

My husband woke up a few weeks ago blind in one eye except for the very exterior. After seeing a regular eye doctor, he went to a retinologist who completed many tests including the fluerescent angiography which showed many white spots in the area of his macula as well as many surrounding that area. They are trying to treat this with prednisone. Prior to this onset, he had experienced a severe sinus problem and began to ache all over his body. It has been three weeks and he now is experiencing white shots of light and moving white orbs in the affected eye. He is a meat cutter by trade and thought the joint pain was just related to being slighly overweight and 40 something. He does cut deer on the side and I can't help but wonder if this is related to Lyme disease but all tests are coming up negative on that. It seems far too coincidental to me that all of the guys he works with also have joint and muscle pain as well as some type of eye ailment (not blindness but one has glaucoma and the other has double vision). The prednisone has relieved the pain in his body but has not improved the blindness. As you are all frustrated......so are we. They have begun to speak about going to the Cleveland Clinic but I noticed many have taken that route with no satisfaction. Has anyone's doctor considered a parasitic condition? We are considering a natural detoxification treatment in hopes that it will cleanse his body of infection caused by a possible unknown parasitic presence.
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by extrmlea on 06/05/2008

I was diagnosed with MEWDS in my late teens, I am now thirty years of age The first onset of MEWDS I had was at age 15 I went to bed with what I thought was a headache (migrane) I had a head cold and was not feeling well the next morning to my surprise I was blind, my right eyes was 98 percent and my left eye was in the fifties it has been a long road for me I was admitted into the hospital for prednisone by iv and antibiotics. I was on steroids for several months (Prednisone) and of course I gained weight and had alot of issues with that, I was wondering if anyone has had occurances with this disease I have had several and very frightened that I may end up losing my vision all together since each occurance makes your blind spot larger I had not talked with anyone that has had many occurances and I have had over ten that i can count some only last for a few days. I have asked my opthomalogist about this and he said it was extremely rare. I am interested in any input you can give me. Thank you
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by ess358 on 06/27/2008

Hello. I am a 29 year old caucasion female and was just diagnosed with MEWDS today. I must admit I am a little scared after reading all the posts about re-occurrences and permanent damage. My symptoms are grayed out blind spots all over my visual field - however, what I can see through the blind spots is still 20/20 so I guess thats good. I was told there is no treatment so I'm just going to wait it out and have researched food that are good for inflammatory conditions. I haven't been sick recently at all, however, I am a pediatric oncology and bone marrow transplant nurse and my kids at work get all kinds of wierd viruses that normal people wouldn't get because they are immunosuppressed. I am exposed to all of these wierd viruses all of the time so I am guessing that that could be the cause? Who knows? Here are my stats for those who are trying to find similarities....

29 years old
Caucasion
5'5, 130 lbs
Exercise a lot ( 5 x week)
Eat very healthy, however, I drink tons of Crystal Light and other Aspartme containing sweetened drinks so I am going to try to cut back on that
Don't smoke
Drink about 1 to 2 times a month
Spend about 2 hours a day on the computer
No recent sickness
Frequently exposed to lots of wierd viruses
Recently stopped taking birth control?
Significant family history of rhematoid arthritis and lupus

Hope it helps!
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by HerrBob on 07/31/2008

Hello. I am 19 year old relatively healthy (Ive got about 25 lbs of extra baggage, an abnormal sleep schedule [I'm a full time EMT and paramedic student] and smoke occasionally) who has been tentatively diagnosed with post viral retinitis with the possibility of retinitis pigmentosa. At first I was horrified, but after looking more into MEWDS, I became skeptical.

My symptoms:
Acute appearance of greyish blind spot in left periphery, about mid-vision field. Two weeks later acute onset of greyish blind spot in right lower middle of vision field.

When I blink the spots instantly turn black, but within several seconds return to their grey haziness, and eventually become indescernable, but still retain vison loss in both spots. When light rapidly changes (like turning the lights off in a room and it goes dark) the spots instantly flash orangeish-white, then return to murkiness.

No flashes, no pain, no loss of central vision.

Can anyone tell me if these symptoms correspond more towards MEWDS or RP? I would be greatly appreciative.
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by cjdono on 08/31/2008

I was diagnosed with MEWDS early this year in February. I still am having the same problems, last dr visit was in June, will not go back until October now. I did notice that it seems to be worse in the mornings, I am beginning to wonder if it is occupational environment? My dr said it was a virus and no treatment was indicated. Up until that time I had no problems with my eyes, it came on very sudden with a migraine which I have never had in my life! I thought at first I was having a stroke. I am a caucasian female 45 years old. I went immediatley to my dr who sent me to a retina specialist in Minneapolis.
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by PJD91361 on 09/05/2008

HerrBob:
You describe the symptoms I had back in 1992-93. I am severly near sighted (-11.50) and was 22-23 at the time. I thought it was stress related because of working and going to school full-time but I never got a definite answer. I thought I was going blind. I endured several eye tests (one was rather frigtening and could have been right out of a horror movie) and trips to the retinologist before they discovered a crack in my macula. I did not have any trauma to the eye nor did I suffer any head injuries. The grey dots just showed up one evening. I was told there wasn't any treatment but my doctor did inject steroids into the eye to close the crack. But my vision hasn't been the same in the right eye since. Not only am I severaly near sighted, but now I have astigmatism, blurry vision which impairs getting an accurate eye exam. I am learning to live with this added problem but I am very frustrated and afraid that I will lose my sight before I am 50.
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by rie on 10/12/2008

Hi! I am a 29 year old woman from Denmark (so sorry for the bad gramma!). I was diagnosed MEWDS 5 1/2 year ago. I was under a lot of stress, because my husband and I was opening our first shop. And one day i noticed that I couldn't se the left half of my face in the mirror. I have had some disturbense in my sight before (now I have been diagnosed with eye migrane), so I thought that it was that. Luckily my husbands aunt is an eye scientist in Denmark, so I got the best care. The doctors in Denmark diagnosed me with MEWDS, but they said that they didn't knew why I had it... I was more than 50 percent blind on the left eye, and saw white dots al the time. The good part is that it completely disappeared after little more than a year. A year ago i had my second baby. He didn't sleep well, so I was under a great deal of stress again, and the MEWDS came back. Again I was totally blind in more than 50 percent of the left eye, and also the right eye was slightly effected. It has been a year now, and my blindness have improved, it is know about 20 % blindness on the left eye. The right eye is the same. The doctors in Denmark gave me a CAT scan, to see if it was something in my brain, but luckily it wasn't!! I have noticed that my "blindness" sometimes have som very strong small dots of lights that occour for about 1 second, and then dissappear. I also have some strange moving figures in the "blind spot" that sometimes looks like a purple spiderweb, and sometimes its just a blinking purple or grey mass.

I hope that i bring a little hope to those who fear this strange disease, that iperhaps ts possible to get better with time...

To compare:

29 years old
Spend everyday about 6-8 hours in front of a computer
Does a little running
No overweight
Tend to stress
Non smoker
Suffers also with "Eye migrane"

Best regard Rie from Denmark
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by ess358 on 11/14/2008

I just wanted to share that I was diagnosed with MEWDS at the end of June 08 (see my posting below) and that it resolved within 3-4 weeks. The healing process was strange - suddenly over one weekend I had tons of tingling in my eye and the blind spots were gone but everything in the affected eye was about 10 shades darker. About a week later that went away and everything was normal. When I went back to the retinologist he said that I had some scarring but that most of it was gone. I did try to follow the anti-inflammatory diet during that time but my retinologist said that that probably didn't make a difference. The only permanent effects that I have are that I am still a little light sensistive. Just wanted to let people know that it does go away. When I first read the message boards I was scared because it seemed everyone's had re-occured or not gotten better so I wanted to share a sucess story.
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by ashleybates on 12/29/2008

Well, 18 months later I am having a reoccurence. It started Dec 22 when I woke up & noticed I could not see to put my eye make up on. My vision had improved significantly over the past year and I was told it was rare to have a reoccurence. My vision droped 5 lines on the eye chart overnight. The des gave me a steroid injection & a anti-VGE injection. I just pray that my eye will not suffer any more permanent scarring like it did last time. I am 38 years old and the past few days have been devastating.
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by LINDAGARDN on 01/23/2009

I've had MEWDS for about 15 years. The first onset, in my left eye, was a black screen with white dots. Over the years the flashing has subsided greatly and I have clearity of vision, with occassional flashing. My eye doctor watches the MEWDS closely and he has it, as well. I find what triggers the flashing is a pressurized cabin on an airplane.
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by pdc77 on 02/20/2009

I'm a 31 year old female who was diagnosed with MEWDS 9 years ago. I woke up one morning to find the vision impaired in my right eye by a grey fuzzy patch, just right of my direct line of vision. I didn't become concerned until I left for work that evening and found that the fuzzy patch was now "flashing", making it almost impossible to drive. My doctor thought it could be a detached retina and sent me to a specialist who diagnosed it as MEWDS. I was told it was an extremely rare virus that he had only read about in medical books. While the cause and cure are unknown, he advised me to be patient and that it should eventually subside. Unfortunately there was a chance it could return and possibly move to the other eye. My eyesight adjusted to the fuzzy flashing annoyance and within 6 months it was gone. It has now returned in my right eye and seems to be more apparent in the morning, when I'm around water (showering, swimming, etc.) and when I'm tired. It doesn't seem to be worse than it was 9 years ago so I haven't seen a specialist. Hopefully it will disappear on it's own again this time!
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by Di Di on 02/26/2009

Hi All,

I too had mewds about 4 years ago and went through so many of the same experiences you all had. The one thing I did, that I swear helped, was I started juicing carrots and apples. I would juice 1 apple to 3 or 4 large carrots at least 1 once a day and drink that. Now it may be coincidence, but within just a few short weeks my vision dramatically improved and healed to near what I had before the virual attack.

Since then I have stopped juicing and my vision is generally okay, but I still have an enlarged bline spot that I notice once in a blue moon. I think hyper good nutrition is one answer and as I write this I plan to go back to juicing just to help ensure the continued good health of my eyes. It sure cannot hurt...give the body some good ammunition against the virus and potent tools to heal.
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by jlf on 03/03/2009

I just wanted to ask you all who diagnosed this I have been seeing shimmering spots and dimmness for about 3 weeks now my opthamologist said everything was fine but I don't think so.Did any of you expeerience dimmness or shimmering spots and also it feels like theres a shadow in my periphrial vision on one eye.Hopefully someone will help me.
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by Tinkerbelle on 03/07/2009

Hi everyone, I am so relieved to find this site!

I was diagnosed with MEWDS last week. My symptoms are:

RIGHT EYE:

- lots of dark grey spots and larger dark patches, in the periforal vision and very close to, but not obscuring, the centre. The patches intensify when I blink, or look at something bright such as the sky.
They worsened for one week and then stablilized.

- bright orange flashing lights when I am trying to sleep. These are now in the same places as the grey spots.

- mild blurring of vision but VERY SLIGHT.

LEFT EYE

-enlarged blind spot.

My doctor says I have MEWDS in both eyes (he can see the white spots)

I think comparing lifestyles is a very good idea, there must be a reason for this terrifying disease - it cannot just be "random." I am:

- just turned 20 years old
- female
- 5 ft 8 and weigh 116 lb
- short sighted
- astigmatism
- have been pretty stressed for the past two years, I am doing a maths degree (which is hardcore!) and my mother was diagnosed with cancer last summer.
- i have meniere's disease and ehler's danlos type 3.
- medication: serc
- eat quite healthily, reasonable fit
- i jused to do a lot of dancing and gymnatstics and trained professionally to be a ballerina
-i spend quite a bit of time on the computer but no more than an average student
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by Tinkerbelle on 03/07/2009

oh forgot to say...thinking of you all, this is such a frightening disease. God Bless
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by Jesshope on 03/12/2009

It is so nice to have found this site. I have had MEWDS for about 5 years now, and my current "episode" has now lasted for 16 months. It is in my left eye, and I have a large blind spot in the center of my vision, along with the flashes of light.
I am 32 yrs old, and when the MEWDS isn't present, I have near perfect vision. During an episode, I have about 5% vision in my left eye. I have seen specialist after specialist to no avail. This current episode has laster far longer than any of my previous, most of the time they are gone within about 3 months. I have read some of the other posts, and I am going to try some of the things that I have read. Thanks for the information!!
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by lavieestbelle6 on 03/14/2009

It's a comfort to know I'm not quite as alone as I thought in this condition. For a while I questioned whether the eye specialist made up the diagnosis, it sounded so odd to me. He had described it as multiple unidentified dots in the eye syndrome, so I have searched for the acronym; M.U.D.E.S. with, obviously no success. I am a 26 year old woman diagnosed with mewds about 3 years ago. It started as a bright blue sparks in my left eye, to a flashing light, to a grey spot. I panicked, thinking my retina was detatching or I was having an anurysm and made an appt. right away. My Dr. said it was a once in an eye care specialists' proffessional career occurrence and that it won't come back once gone and should completely go away. He believed it was due to misplaced settling of antibodies from a recent cold. It's going on four years now and I still have a small grey area that comes and goes, and flashing lights occasionally, not anywhere near as bad as the onset, but definately bothersome. It feels pretty good to share this with other people that know exactly what I mean. It's a difficult thing to describe.
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by Sandrita on 03/16/2009

Hi!

Im a 20 year old girl from Sweden.
Just for about a week ago I lost sight on my right eye.

They first though that I had a brain tumor, but I was lucky it wassen't.

This is desease is so strange!!!!

The swedish doctors don't know anything about MEWDS and I don't really trust them. I am SOO HAPPY that I found this page and can read about other people who is suffering from this.

The thing is that I don't drink or smonke.
I do alot of training on a higher level and I live a really healthy life.
I eat good, I sleep good.
So where do this come from?

I only see shades of things on my right eye. I dont see anything.

I think it might be from stress...
I've been taveling around alot and never had a rest in my entire life.

well.... now im half blind so...atleast i've learned something..
LISTEN TO YOUR BODY.

I read earlier that make your own carott juice would be good for your sight....and I will try to get a description of prednison!!!

Thank you for this page it was sooo helpful!!!!

white dot girl from Sweden
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by Tinkerbelle on 03/19/2009

I saw my doctor yesterday and he thinks i may have lost some fibres in my optic nerve as a result of MEWDS, has anyone else experienced this?

the effect is a large grey bar (same colour/density as the grey spots caused by mewds) underneath the central vision, spanning pretty much the whole view.
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by louisev on 04/13/2009

I was diagnosed in 1986 with MEWDS. Since I had a history of migraine headaches, the condition was first assessed as optical migraines, but then after the grayness and blurred vision became sharply flashing and dancing lights, I was referred to an opthalmologist, who sent me to Mass Eye and Ear in Boston, where I had full films done that confirmed a classic MEWDS in my right eye. Because of the intense flashing, the doctor prescribed heavy doses of prednisone, and an eyepatch to try to cut down on the interference. But I basically found myself in a dark room for weeks. They had no information on how long it would last, or when it would get better, but after about a month and a half, the intense flashing began to subside. However - and this is probably the most important thing for those of you who are nearly diagnosed - it can take a very long time for the residual flashing and glittering effects to fade. I would have a circle of scintillating light show up in my right eye for 4-5 years later. It has been a long time since I have seen any symptoms, however, and my eyesight did return to normal. Like most other patients I fit the profile: significant nearsightedness, and onset at age 26.

If you have had the disease for many months, don't lose hope of regaining your full vision. My recovery was definite but very slow. My retina was covered with dots, and it takes time for them all to go away. Recurrence is always a possibility, but it is rare to contract it again.
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by catherine1122 on 04/20/2009

I am a 47 year old female and i have just been diagnosed. It was interesting to see the points Tinkerbelle listed in March 2009, so i thought i would do the same:

47 years old
Female
Short-sighted
Migraine sufferer since a teenager, and
Also get eye migraines, ie auras which flash very similar
I had extreme stress just before the onset of MEWDS
Stroke and brain hemorrage hereditary
Tinnitus almost constantly
Had a lot of tingling and pins and needles in the hands and feet for 2 months before the onset, gone now
My eyes have been very dry and achy since onset
Have it in both eyes, left one is worse
Could medication trigger it off????
History of glaucoma in family

I can't think of anything else but hope this rings bells for others, and we can help each other, seeing as though the specialists haven't a clue, whatever country you live in - I'm down under in Australia :)

Cheers
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by acemom on 04/30/2009

indifferent about being 100th posting. God bless all of you I am the mother of a 19 son diagnosed with this condition. I can't imagine what he is feeling but after reading your comments I better give him a big hug! Not much in common with most of you but for kicks here are the stats:
19 years old
bi-racial male
college student, works, lives at home
not too many veggies but not pure junk
water over sodas
non-smoker...cigarettes
sinuses not allergies
hot humid big city
no other ailments ever!
fit and strong
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by jdklvans on 04/30/2009

Just got back today from Northwestern Univ. hospital in downtown Chgo and was seen by the chair of the Ophth. dept there after retina specialist referral. Dr told our 16 yr old daughter that she has MEWDS and after having dry version of Macular Degen. in our family we are relieved to know that it is MEWDS. We will still be concerned until it is gone though. Dr. said it should go away in a several more weeks, so we have a follow up appt in 4 weeks. Our daughter is very healthy and eats right and had not had any real sickness prior. She did have the gardisil vaccination (finished last summer) though, but we haven't found anything showing that it could be caused by that. She sees a central gray spot and a few smaller non-floating spots around it. She has had it for about 7 weeks now. She found it while putting on her eye make-up one day. This group really knows their stuff. Dr. Jampol, Dept Chairman, was terrific and very knowledgable on the syndrome & diagnosis. With the pictures, they did both dyes (orange and green) and were able to concur on the diagnosis pretty quickly in the room with us and explained their findings as well. We are encouraged.
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by EBrown on 05/01/2009

I'm so glad that I found this site, Im 18 years old, and i was diagonased with MEWDS today but they have caught on what it was easy enough. Though i did feel like i was a bit of a freak as my consultant called in most of the others to look at my eye and they seemed excited to have seen it, my mother was not best pleased.

Is it still okay for me to drive as I have a blind spot in the left of my left eye?? (I asked my consultant and she had no idea)

Does anybody else have a weird black/white flicking in the eye with MEWDS??
MEWDS Multiple Evanescent White Dot Syndrome
Posted by nikkim2709 on 06/12/2009

I was diagnosed today! I got a sudden loss of my central and peripheral vision 10 am Tuesday while working. Looked as if I'd been staring into a light bulb or the sun but it wouldn�t clear up. I was sent to the ER who then sent me to an ophthalmologist. I have been in Tuesday, Wednesday and now today (Friday). Every test came back normal as I have always had great vision. Today he is seeing a granular pattern on my retina. He diagnosed me with MEWDS. He told me its a viral infection and will eventually clear up on its own and I�ll have my full vision back.
Now after reading your responses I'm second guessing what he has said!
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by kwiklip on 06/13/2009

This is the first time I have come across a discussion like this, and I am glad I found it. I was diagnosed with white dot syndrome/chorioretinitis about 9 years ago, when I was 26. I was told that the "white dots" are scar tissue from the chorioretinitis that I had apparently contracted and recovered from without realizing it. When diagnosed, I, too, was told it is a very rare condition and that there is no real treatment for it. Of course, this was after the three days of testing -- ugh! I hate the flash pictures! I only have it in my right eye and didn't bother going back to the opthamologist for years, partly because it hadn't seemed to change and partly because I didn't want to go through the testing again. Now, though I am kind of scared, because the dimness/monochrome color and flashers/floaters seem to be getting worse. Can nothing be done???
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by taclar on 06/19/2009

Hi. I'm a 34 year old female who hasn't yet had a concrete diagnosis of MEWDS, but it's being discussed as a possibility. I too had the sudden loss of some vision in my right eye following a cold. Most of the vision has come back but my eye doesn't feel 'right'. Although eye tests seem to say everything is back to normal, (still awaiting a field test for blind spots though), I feel my vision in my right eye is sometimes slightly blurred and as if my eye isn't focusing properly. I have been diagnosed as slightly long sighted last year, although don't believe this is related to my problem. I do get the flashes and sometimes find it hard to adjust to differences in light, i.e., walking into the sun from a building, or walking into dimly lit rooms, which I never had before. Does anyone else get pains in and around the affected eye socket? I get sharp pains which don't last long, but these cannot be explained by the doctors. Maybe it's eye strain...I don't know. It's a bit of a weird one this MEWDS isn't it??
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by taclar on 06/19/2009

Thought I'd addsome facts about myself to see if there's any links.

34 year old female
white
recently diagnosed as long sighted
overweight
asthmatic and have allergies
stressed
up until recently worked 11 hour shifts on computers without regular breaks
history of short sightedness in family
ex-smoker (fairly heavy - gave up 5 years ago)
vegetarian

God I sound really bad looking at that haha!
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by redrob on 06/24/2009

Hi! I'm your "atypical" MEWDS--older. Dx last week. Now they want me to come back to see another opthamologist. Problem is, it's a 7-hour drive. Based on the lack of possible treatments--I'm considering whether I want to bother.

Like an earlier poster, I realized something was wrong when I couldn't see my right eye to put make up on it. It does seem to be resolving so far. (I can see the eye now--but it's not completely clear.) Like so many others, I was told it would resolve spontaneously and not return. Hmmm. In any case, I believe God is in control. I trust him to take me through whatever turns up. I felt such a sense of his comfort and presence when I was waiting for the Dx!

Here's the rundown:
female
55
blue eyes
caucasian
fit
5'7" & 140 lb
no smoking
drink only water
lots of computer
fair amount of job stress
healthy, though non-politically correct diet (lots of organic beef, only full-fat dairy, lots of butter, no oils except olive, no processed foods or sugar)

God bless you all! And thank you for sharing! I don't know your names, but I'm praying for you.
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by jlc111 on 06/29/2009

i was diagnosed with MEWDS in the spring of 2007. I was 27 years old at the time. Fair skin, blue eyes. It afected my left eye and like many of you I woke up one morning and just couldn't see out of the per. vision. I thought it had to do with my sleep, but after nothing returned after my shower I began to panic. I noticed shadows and blurred vision as if I was looking through plastic wrap. I remember reading stories at night to my son and closing one eye and no seeing anything and then looking through my "good eye" and being able to see perfectly. My doctor seemed perplexed, and did not offer to much information. It did eventually run its course, however I still get occasional blurred vision and foggy spots at times. I have seen flashes, however I have been trying to ignore them...in hopes that ignoring will mean nothing will come back. My worst fear is that it will affect my other eye, or leave something more permanent. I wonder often what causes this...I had been on a strict diet and exercise plan to lose baby weight...thought maybe I was missing a vitamen or two...sun...then I thought maybe computer screen exposure...i guess we are all inthe dark on this one unfortunately. It is comforting to hear others stories.
Take care all!
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by jlc111 on 06/29/2009

In answer to the above...I also felt sharp pains...my doctor said I was just hyper sensitive to the area because of what happened...I on the other hand do not agree with that :) I def. felt the socket pain and almost into my head if that makes sense. At times I feel it in the same spot... I notice when I am outside in the sun I feel similar pain...I feel like my eyes are much more sensitive to the light then before. Not that this helps...but u are not alone :)
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by jlc111 on 06/29/2009

In answer to the above...I also felt sharp pains...my doctor said I was just hyper sensitive to the area because of what happened...I on the other hand do not agree with that :) I def. felt the socket pain and almost into my head if that makes sense. At times I feel it in the same spot... I notice when I am outside in the sun I feel similar pain...I feel like my eyes are much more sensitive to the light then before. Not that this helps...but u are not alone :)

Personal question...but does anyone notice their eye issues flair up around that time of the month---or when hormones are at their highest? Also...any thoughts on the birth control pill...(haha I am just about to start taking it again...and as I am looking at the pack my brain is saying they may be the culprit?
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by schoolbusdog on 07/17/2009

I have been to several retinal specialists, as I have re-ocurring symptons all the time, much like what has been posted as other's experiences. the Doc's don't seem to know much about MEWDS and have "poo- pooed" it. Additionally I have severe headaches and nausea, as well as some joint pain. Sometimes they all occurr with the flashing, sometimes not. They have referred me to other specialists and I have had a ton of bloodwork to rule out other stuff( virus, auto immune etc.) and I seem fine there. Symptons are definitely worse around my monthly period.
anyone else experiencing severe headaches and nausea?
One Doc thinks I have migraines and the flashing and nausea are symptoms, but that really doesn't explain the scarring in the eye.
any thoughts?
thanks so much
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by DGS on 07/18/2009

Hey im 16 years old and female..i was diagnosed today with MEWDS..Its scary and i dont fully understand it? Will I go Blind? I am a competitive gymnast and competitive equestrian..if i go blind i will lose my whole world..any one have words of wisdom for me?
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by cherice67 on 08/20/2009

I was diagnosed with MEWDS a few days ago, and my doctor also said it was very rare and seemed excited to have found it. I am a 24 year old multi-racial female and started noticing the symptoms about a week ago now....like most of you, I see these darker, shadowy spots when I only look through my left eye, When looking through both its hard to focus as well......Very often I also see glittery flashes in my peripheral vision through the left eye......After three days of testing at my optomestrists office, he also sent me to a neurologist because of another condition that was found called, pseudotumor cerebri......Like most of you, I constantly switch looking through both eyes to see the difference and it really bothers me....its definately hard to adjust to.....I will keep you all posted on what comes next.
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by whatnow1 on 08/25/2009

today i have been dx with MEWDS, i am 33 years old female and around 10 wks ago started to get pain in my right eye when looking to the sides this was followed by a loss of vision in the bottom and right of eye which was then followed by pain in left eye also, at first i was told i have optic neuritis, i saw a consultants who seemed quite excited but assured me it wasnt that, ive had ct scan, mri scan, chest x ray, an ecg for eyes, pictures taken and a ultra sound of both eyes. which has resulted in this dx. ive been told by my consultant who is an expert on MEWDS that its very rare and that although the vision will given the lenth of time probably stay the same it wont get worse and seems to have leveled out and that i'll get used to it, reading the above comments this seems quiet true so im not too worried.. at least its not MS or a tumour. i've also been told i'll continue to see my consultant for some time so at least they are keeping an eye on it..... boom boom cheers for others leaving their stories on here as my consultant said as its so rare i prob wouldnt meet anyone with this condition
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by bargate on 08/26/2009

Dear friend,I know your pain because I am blind by right eye and left eye having spactacle for near and distant.I consulted with so many doctor but no one give perfect treatment or said my problem is critical and there is no perfect medicine for this but once I heard about Yoga and Prayanam and started the both then after six month my spactacle removed and my blind eye becoming healthy but very slowly.So you can easily find Yoga and Prayanam Classes in your location if you life.
Siddharth Bargate
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by lanie931 on 09/16/2009

Thank you all for sharing your stories. Although the first thing I have noticed is that aside from the diagnosis every story, symptoms, etc. seem vastly different.

After a long week, my 12 year old son was diagnosed yesterday with MEWDS. He woke up one morning with a blurred spot in his central vision of his right eye. Problem is that he was diagnosed with Lazy Eye at age 4 and this is his "good" eye. The retina specialist saw yellowing of the macula in both eyes and thought it might be BEST disease. We were referred to Bascom Palmer in Miami. After many tests they decided it was MEWDS. Upon leaving were were cautiously optimistic about the diagnosis that it would go away on its own.

At this point I am trying to learn as much as possible, which appears to be limited resources at best. I will share his info (though he seems to be atypical)

12 yo male
ADHD (concerta)
allergies (cats and dogs, taking shots)
very active in sports
no food patterns (soda rarely)
Florida

Best of luck to everyone and hoping that the medical community figures out this mystery!
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by mvogt1 on 09/22/2009

I am a 34 year old female who is near-sighted and was diagnosed with MEWDS 4 years ago and am experiencing blurriness in the eye I was affected with now. Does anyone know if there are any long term side effects?
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by momo24 on 09/23/2009

I am so glad to have found this sight, I just wish it had been around in 1988, I have never met anyone else with this disorder. I was diagnosed in 1995 after many years of trying to find out what was wrong with my eyes. In 1988 after a viral illness and a particularly stressful time, I suddenly developed flashing lights in my left eye along with an area of complete darkness in dim light. During the day it looked like a grey fog or cloudiness and the flashing was intermittent. I found that in times of physical exertion or stress the flashing lights were more intense. After about six months, the flashes subsided, although I occasionally have them pop up now and again. I spent many years and went to many Dr.'s, including retinal specialists with no help. They had no idea what it was, and could only advise me that I had a comma shaped scotoma and that the vision loss seemed to be permanent. I had MRI's, cat scans, retinal angiograms and tests for all other causes of vision loss, MS, brain tumors etc with no answers. At one point I was even advised by one general opthalmologist that it was all in my head, which was very discouraging and upsetting. I finally found a sympathetic physician who referred me to the Dever's Eye Clinic in Portland OR, where I saw Dr. Shults. Finally after all those years, someone knew exactly what I was talking about and I was given the diagnosis of MEWDS, and like many of you, told it was fairly rare. That was in 1995 and since then it has not reoccurred or gotten worse. It was difficult at first to adjust to the constant blur and loss of vision in my right eye but eventually my eyes adjusted. I unfortunately had a vitreal hemorraghe in my right eye which has caused blurring in both eyes, however I do pretty well. In my case 2 eyes is definitely better than 1! I would highly recomment Dr. William Shults at the Devers Eye Clinic in Portland. I wish you all well.
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by Laurieinwa on 10/02/2009

I want to add that mine did improve from the beginning of my episode. The many smaller blind spots merged into the one bigger blind spot. My blind spot has shrunk on the VEP but not really in my sight. I have it in both eyes with testing done by Dever's Eye Institute showing it worse in my better eye....i don't know if that means it will show worse in my vision at a later date or what. No one up here in the Seattle area really knows much about it, and I feel that it is worthless to go see the docs about it. I have also been having posterior vitreous detachment since January of the year, so more floaters and flashing at night in my side vision on my left eye. The flashing in the blind spot in my right eye has never gone away, you learn to live with it and don't notice it most of the time. The flashing at night when my eyes are shut is much less noticed than when i first got it. At first i was also very sensitive to light too and had to wear sunglasses inside.
46
female
avid reader
20 pounds overweight
average eater
very near sighted -15.00 in both eyes
no illness before onset, no treatment
non specific lesions on brain
off balance since 5 months after onset
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by lyndyloo41 on 10/02/2009

Hello I am in the process of going through all the tests that you all seem to have had after the sudden onset of blind spot in my right eye about 2 weeks ago. Initially told it was optical neuritis but now amost certainly MEWDS I have read through most of the blogs after also being told -it was unresearched but should vanish about 3 months from now ,I have mixed feelings now as this doesnt seem to be the case with all of you !! nice to know that everyone with this has had similar experiences but I also have a chronic headache and extreme fatigue at the moment , anyone else gone through this ?
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by cheryl25_1999 on 10/06/2009

Wow am I glad to find this forum. I am a 38 yr old woman who was diagnosed with MEWDS in Feb 09 - woke up one morning and went to put my make up on when I realized I couldn't see my right eye or my face when I closed my right eye to apply eyeliner. Got sent to many doctors who had no idea what it was. Finally I saw the Chief of staff at one of the biggest Montreal hospitals. I saw 17 specialist before he could tell me what I had. He also told me that it was very rare and he has only seen it once in his 15 yr career. Needless to say, all my central vision was scared, my optic nerve and pupil were damaged at that point. He told me to come back for follow ups every 3 mths. After the first two follow ups i didn't return in August....biggest mistake I could make...so please if anyone is told to do follow ups...do them!~ Woke up two days ago, and had black spots and warped vision...from my GOOD EYE...to my horror i ran to the hospital and was told last night that it has come back and it's attacking my right eye. I spent all day today doing tests of all sorts. I go back tomorrow and they are going to put me on steroids and hope that it will not attack my central vision. I am scared...I am a single mom with two teenagers and if I can't fight this...it will change my life forever. No driving, no working...I will be considered blind. I never wrote on a forum before but I felt that if my story could help someone,...it was definitely worth my time. Good luck to everyone and stay strong!
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by whatnow1 on 10/23/2009

thought i'd do a follow up, its been almost 4 months since i was told i have MEWDS, whats changed, well not much, vision is prob the same although its worse in the mornings and on bright or overcast days, its been back in the other eye but so far the vision is not affected, i have 6 months now until i see my consultant again but he assures me i'll get used to it, which im sure long term i will, short term im still pi**ed tho, stay strong guy x
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by blaketeh on 11/02/2009

Help Me! I have not been able to see correctly for over a week now and was diagnosed by a Retinal Specialist with White Dot Syndrome. I am now awaiting the blood work results looking for viruses. In the meantime, every minute of my life is a nightmare. I can't see! I can't work, I can't drive. I'm at a complete loss and it seems nothing can be done. What do I do?
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by juniakall on 11/11/2009

Hi everyone,

I live in Australia and I've been diagnosed with MEWDS three months ago. It affected 40% of my right eye.

In the beginning there were lots of small spots, after 1 month they became one big one (like the shape of a bean). This spot usually flashes a lot, specially when I'm somewhere bright. If the lights change quickly to dark, I see the "bean" like a fluorescent blue light for a few seconds.

I tried to list a few things that I had done before that happened:

1. I was in the cinema (Planetarium) when I first felt.

2. Just before I got in the cinema, I was in the Science Museum having my peripheral vision tested for fun (there was a little light flashing around the machine).

3. One week after that, I had taken, for the first time, the Morning After Pill. Which contains lots of hormones...

4. I've been working in front of the computer for 8 hours a day, minimum, for the last 10 years.

I don't know how those facts can be related to this condition. Neither the doctor knows.

But if most the cases affect women, I guess that it might be related to hormones in a way.

Looking for help... If anyone has more info, please contact me!

Thanks and good luck.
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by JoT on 11/11/2009

Wow! So glad I found this site. I'm a 37 year old woman from the UK and have had some of the symptoms described here on and off since I was a teenager.

I get a bright light (sometimes turns dark depending on what I am looking at), it's like a from the flash of a camera which can last up to an hour and lots of floaters. (I have once had a migrane and it is not the same as the zigzag flash you get with these).
Sometimes I get what looks like negative photo of my iris and the lines around it - more obvious when I blink and look into sky. When it happens it's scar.
I go through phases of high anxiety, so I wondered if that might be a cause- maybe a sudden change in blood pressure?

I have never been to the doctor about it as I seem to get them for a few days and then gradually it stops and I forget about it, also because it has been happening for so many years I figured it can't be anything life threatening.

Something which I have noticed I am often experiencing a stuffed up congested feeling in my sinuses at the same time.

I think I will go to the doctor about this, just to get them to look properly at what is going on.

I'm 37 - UK
5ft 8
Caucasian
Brown eyes/brown hair
2 children
fit, exercise and eat healthily
on computer way too much

Maybe this condition isn't as rare as they originally thought LOL
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by brokenunity on 11/28/2009

I was diagnosed with MEWDS two years ago (currently 28 female, wear contact lenses, nearsighted), and all the symptoms resolved within a couple months, including the blind spot. I still saw some flashing lights occasionally if I looked at a bright light or was overtired.

Then last week the symptoms recurred. This time I had gone in to get a Tuberculosis (TB) test for work. I had never had one before. I got the shot at 1pm and the next day I woke up with a blind spot and flashing, moving lights. I was surprised at the rapid onset given that it had taken me a couple days to get that bad the first time I had it. I don't know if it was the TB test or if I had been exposed to a virus from being at the walk in clinic where I went to get the test. The TB test itself was negative. I know that some research has indicated a possible link between immune function and MEWDS, I just wondered if the TB test might have triggered it, or maybe I was exposed to a flu virus. I feel fine other than the blind spot. I am optimistic that the symptoms will resolve as they did the first time, but still it is scary to have a huge blind spot.

Also I would like to know if there are any researchers collecting case studies of MEWDS patients. I would like to relate my info to them.
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by wakingupnow on 12/07/2009

Hello, I'm a 20 year old female that was diagnosed with MEWDS when I was 12 years of age. I have 20/20 vision (minus the affects from the condition of course) and I'm relatively healthy.

It has always been in my left eye only actually up until 5 days ago where it suddenly switched completely (it seems) to my right eye. I have notified my eye doctor about this since I had no idea it could happen so suddenly and so drastically.

Since I was 12, I've always had shimmer like patches in the left eye, sometimes looking almost black or purple. Earlier on, I used to explain it as though I looked at a bulb for a few minutes and then looked away and saw the outline of it, but now, it's more random when it goes away for a while and then returns.

I also sometimes have bad night blindness in the affected eye when the MEWDS is at it's worst. It does fade in and out and can last for weeks. It's a rare disease, but I wish there were more informative web sites that could speak "english" about it and not full of medical terms.

It's great to find a place where there are others that have this just like me. Finally others can empathize with me when my fiance' gets angry when I need the closet light on at night in order to see when I get up to walk!
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by JulieBab on 12/15/2009

l've been reading each of your stories and my heart goes out to you all...l am sending all my positive energy to everyone l hope that each of you get better and recover fully from MEWDS.... l am 30 years old and 2 years ago l discovered that l had a retina detachment in my right eye. I had 2 operations to fix it...I came out of it with barely no vision in my right eye. But l was relieved that my left eye was ok and l could still see...But today I was diagnosed with MEWDS in my left eye. My symptoms have included blurring vision, flashing lights and floaters... when it started l could not read or use the computer at work. My central vision was impaired and l could not see the centre of people's faces... pretty scary stuff...since then my vision has slightly improved and the doctor's told me today that it will go away in 6-8 weeks...l am hopeful..l'm so glad that l discovered this site...it is comforting...thanks for sharing...Julie
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by jessica321 on 12/21/2009

I have been in my current episode of mewds for 2 years now. From what I have read from other posts, this is a very long time for this episode. I did have one other episode about 4 years ago, and it lasted for about 3-4 weeks. My central vision is completely gone, and as others have said, I can see everything except for what is right in front of me. I have been tested for ms, and all tests have come back negative. It is so frustrating to have this disease.....I wish there were more answers. My opt.neurologist said that it "should clear up on it's own...and since it went away before, it should again" but I am not satisfied with that answer. Before and after the episodes, my vision has been perfect, but now I am having some blurred vision in my right eye, and I am wondering if it is because that eye is working harder? Also, has anyone else experienced depth perception issues? I will go to grab something...and completely miss it. So tired of seeing nothing but spots and gray!!! God bless you all, and I hope that one day there will be a cure!
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by letta on 12/29/2009

I am a 28 year old female who was diagnosed with MEWDS on December 18. My symptoms started in my left eye with one day noticing that my vision was grayed out like there were clouds in the way. At no time have I had pain, flashes, floaters, or anything else. I went to my eye doctor and he sent me to the only retinal specialist in town. After lots of tests and pictures it showed that I had white dot syndrome in my left eye. My right eye also showed swelling in my ocular nerve. In a few days I went back for more test and they found that it moved to my right eye and my ocular nerve is even more swollen. My vision stayed the same. I was put on prednisone. Since that time my vision is going in my right eye now. I can no longer legally drive and things are extremely blurry and grayed out. I am told my blind spots in my vision have grown and will never come back. I am now in the waiting period to find out if my vision gets better, worse, or stays the same. I am extremely scarred for what is going to happen. Unfortunately I am an interior designer which you really need good sight for. To top it off I have no insurance or anything. This is very stressful not be able to do anything, just wait. I take comfort in the few success stories that I have read. Thank you to who ever started this message board
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by 2Graphic on 12/31/2009

I am a 44 year old graphic designer and had my first episode about 6 years ago. The specialist said it could improve in a few weeks or up to 9 months or it could stay the same. It was 7 months later that I felt I was seeing normally again. The lasting impairment was not enough to bother me. As I sit here tonight reading all of these stories I do so with one eye covered because it is back and that is the only way I can read. I am encouraged by the use of Prednisone and will discuss that with my doctor tomorrow. I know the side effects are plenty, including blurred vision, but I am willing to give it a shot if the doctor is. Thank you for all your postings. It is good to know that I'm not crazy or alone and that you all are experiencing the same kind of symptoms and fears. God bless.
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by 2Graphic on 01/07/2010

Posting again after my most recent doctor's appointment. This time I have a detached vitreous and inflammation in the retina. The symptoms are the same as with MEWDS and the doctor feels there is a connection between the earlier MEWDS and now this detached vitreous. I am taking steroid drops and anti inflammatory drops in hopes of clearing up my vision to the point of it tolerable. If that does not happen the next step would be to remove the vitreous. I'm wondering if any of you have had this experience as well.
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by twilson on 02/07/2010

Hi-Glad I found this forum as I have been dealing with this for about 6 years now, so here is my history....

I am a caucasian female, and about 6 years ago, when I was 26, I all of the sudden experienced 2 blind spots which I can only describe as whitish gray blobs that obstruct my vision when I look at something in the light in my right eye. During this same time, I had what looked like white polka dots on my retina in my right eye. The retina specialist told me that it looked like I had MEWDS but that the two blind spots were actual infections on my retina. The only thing that I remember experiencing right before this episode was a SEVERE cold which I remember to this day as being horrible.

About 4 years later, I reexperienced getting the white dots on my right eye. The retina specialist said it was wierd that they came back because MEWDS does not usually come back but they could not tell me what it was.

I am now 9 months pregnant, and have just experienced what looks like another spot in my right eye, which looks similar to the 2 scars that I have from the first episode. I do not see any indication of the white polka dots. I went to a retina specialist and he said that he didn't see what I was talking about but did not do an eye scan this time, likely because I am preggers.

Has anyone experienced these symptoms and if so, found out what the cause is? They always resolve themself in regards to the white dots on my retina go away, but now I have 3 dark spots that I see. My vision is always fine and my eyesight although obstructed somewhat never goes blurry. I do get some eye burning sensation when these episodes come on, but other then that nothing. I have no other medical history.

Please email me (terriannwilson1@yahoo.com) or respond if you have experienced this same thing, especially while pregnant as I am concerned if this will affect my baby. Thanks!!!!
Terri
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by cheryl25_1999 on 03/07/2010

I last posted in June 2009, read that post. I am updating because I have learned so much more and I want to help anyone I can. In my last post, my left eye central vision was scarred and it had started to affect my right eye. I was referred to another specialist who deals in infectious diseases as well as eyes. He told me he has 4 other cases who have MEDWS. I felt hopeful that at least he might know a bit more then all the other doctors who had never seen this. My episode has been going on a year now. I am currently taking prednisone, Imuran & Neoral. 24 pills a day in total, to keep it at bay. The doctor tested me from A-Z, everything came back negative. Anything from TB, MS, AIDS, Sars, and exotic type of blood testing, even though I haven't left the city in years and nothing. He told me not to get my hopes up for a positive result because he has tested his other 4 patients the same way and never found nothing. He decided to cut down on my prednisone and increase the other two medications. Within a 2 weeks, I got 3 more blind spots and rushed back, only for him to put me right back on.
I noticed one of you asked if anyone had lost depth perception, I definitely have. Cutting my nails, doing my eyebrows or just focusing on something small, forget it, I can't do it anymore. I have total night blindness and therefore I can't drive at night any longer. Even to just see a t-shirt in the closest in a dark corner, I can't see it. Anything in a dark space, is impossible to see. I hope this helps anyone of you. It's been a hard fight and I keep fighting it, it's made me depressed, scared but I try to stay positive and see my doctor every 3 wks. If anyone would like to talk or just have someone to lean on, feel free to email me at cheryl25_1999@yahoo.com.
I wish you all the best, Cheryl :)
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by SurUnNuage on 03/14/2010

Hi, I am from Canada and was diagnosed with MEWDS in the summer of 1990 and it came back 6 months later. Yesterday, I had an appointement with my optician and they do pictures of the eye and peripheral vision test as well. When I said that I had MEWDS twice (that is why she saw some scares on the pictures), she said that I could not get a laser correction of sight because it could reactivate the illness. I doubt this information is true. Does anyone has been told similar information? From the opinion of the optician, seems that it may come from a heat and humidity activated fongus. Can anyone confirm this or else?

For castaway :
I was 20 at the time of the illness;
blue eyes,
brown hairs
very athletic,
healty eating,
no soft drink,
beer and wine once in a while (allowed in Canada)
no drugs,
I was reading under the sun the day
Computers were not so present in my life when it happened,
before it happened and there was an eclipse later on
this day so that is why I tought it was that but the ophtalmologist told me the pictures would look like this.
history of arthritis (the junior version) - I have seen a paper were the patient has the same history of illness than me and probably was anemic at that time (reccuring for me, no enough meat I guess, too many coffees).
Has alpha-1-Antitrypsine deficiency, asthma but didn't new at that time,
We were livin in an old industrial area which area was deregulated to allow houses construction. There were petrochemicals industry at that time in the surrounding areas.
Was studying my first year as a chemical engineer.
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by nelah on 04/11/2010

I am a 26 year-old female with possible Acute Idiopathic Blind Spot Enlargement Syndrome.

Just a little over a week ago I began to develop blurry peripheral vision in my right eye. I have been in and out of the hospital, opthamologist, neurologist, etc. trying to get a diagnosis and rule out others. An optho-neurologist who has looked over my records thinks I may have Acute Idiopathic Blind Spot Enlargement Syndrome. On Tuesday, I am seeing another neuro-opthamologist to hopefully get a confirmed diagnosis.

I was put on prednisone about four days after I noticed that something was wrong with my vision. Since the bind spot was getting worse, the neurologist and opthamologist wanted to treat me for optic neuritis, in case I had it. A few days after the prednisone, my vision stopped getting worse and it has been the same since.

This has been a very scary experience. I am glad that this message board is here. I will post more after my appointment next week.

I am otherwise healthy.
Take oral birth control.
Exercise mildly but regularly.
I eat healthy.
Drink a few times a month.
Have brown hair and blue eyes.
Was not sick before the vision got bad, but was extremely stressed out.
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by nelah on 04/21/2010

On 4/13 I had an appointment with a neuro-opthamologist in Los Angeles. He also thinks that I have Acute Idiopathic Blind Spot Enlargement Syndrome. His prediction is that my vision would be 97% back to normal within a few months. I hope he's right!

My vision stopped getting worse about a week after the onset. It has gotten slightly better about a week and a half after the onset and has stayed the same since.

At night, I notice the blind spot more and I think that my night vision is bad because the bad eye has trouble seeing contrast.

Good luck to all of you, feel free to contact me (hadzic.nela@gmail.com).

I plan to update you as I learn more.
Re:MEWDS Multiple Evanescent White Dot Syndrome
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Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by alex_stoffel on 06/03/2010

I was diagnosed with MEWDS in March and none of my symptoms have resolved. I did get a Gardasil shot a month before the onset of the symptoms and I have looked up that some people have gotten MEWDS after getting this shot. But I'm personally thinking it can be many viruses or that its not necessarily the shot that gave it to me. I want to take prednisone to see if it works, but my doctor said that I would probably do better not to try and take prescriptions. Normally I am against taking any drugs or going to the doctor. I am getting worried by reading these posts that I will get serious scarring if I don't try and treat it. I'm also worried about recurrence now that everyone on here seems to have them.
If anyone has any information let me know. Good luck to everyone and glad some have had their MEWDS resolve.
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by alex_stoffel on 06/03/2010

My email is alexandra_stoffel@hotmail.com if anyone has any good information.
Re:MEWDS Multiple Evanescent White Dot Syndrome
Posted by sunset on 07/28/2010

I lost approximately 90% of my vision in one eye and approximately 60-70% in my other eye and was diagnosed with MEWDS about 5 years ago, I was 37 years old. I had a bout with pneumonia before the MEWDS hit and was told the viral infection had went dormant in my body and surfaced affecting the weakest point in my body, my eyes, When I was diagnosed with MEWDS I was told my diagnosis was probably only the second or third reported case of MEWDS so there was very very limited information regarding the disease. There was no known cure and the steroids I was given was basically a shot in the dark. It took some months but I did get my sight back all of it. If you want to talk or ask questions e-mail me shelleyclanton@hotmail.com

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