Newly diagnoised with macular dystrophy
Posted by JessiAnz on 11/11/2007 at 11:36 AM
I was diagnoised during a routine eye exam. I currently have 10/10 vision with no symptoms. I am 41 years old and do not have any family history of this disease. I guess the toughest part is not knowing when I will start to lose my vision. I'm confused and frightened of the unknown. I am scheduled to see a retinal specialist and I'm hoping he can tell me which form of dystrophy that I have. From what I have been reading, there are alot of people out there that aren't sure of which dystrophy they have either. Whew, I don't even know which questions to start asking first. I guess I'm just a little mind blown at this point and just need to reach out in some way.
There are currently 9 replies
Re:Newly diagnoised with macular dystrophyPosted by carol and sly on 11/11/2007 at 11:58 PM
I have rp. I am also losing my eyesight I know how scare you are.look for rehab or blind center it is a place to start before lose your eye sight. I went to blind center I learned cooking,computer,brille.senses training and conseling so I a m to much afaid of going blind. firstname.lastname@example.org carol in ca
Re:Newly diagnoised with macular dystrophyPosted by Afrank on 4/26/2008 at 8:48 AM
Your post is a bit old but maybe people come back and check them....I am new to this site and newly diagnosed with macular dystrophy myself, I am only 31. I was told I have a form of juvenile macular degeneration called fundus flavimaculatus. This is a form of stargardts disease which affects children ages 6-12. Fundus flavi affect people over 30, it is a from a recessive gene inherited form my parents.They tell me I will lose central vision to 20/200 or 400. Right now I am 20/20 and 20/15, this is something my optomotrist found in a routine retinal scan they offer at their office. I have since seen two specialist who told me the same thing....yes I have this and there is no treatment or cure at this time. I am left to worry about what the future holds for me and when I am going to lose my sight. I know how you are feeling.
Re:Newly diagnoised with macular dystrophyPosted by shaunsmom on 7/24/2008 at 12:15 AM
Two weeks ago I was diagnosed with macular dystrophy.I had known for almost year that this was a possibility but until two weeks ago I had hope that somehow they were wrong.After going from my optometrist to the eye specialist to every test under the sun I finally went to the Mayo clinic for answers and now even after 2 weeks of knowing for sure that I do have this disease I still cant seem to accept it as fact.It feels like it is happening to someone else and yet I am well aware that it is happening to me. My first reaction and one that has stayed with me is total panic, I have 3 of the most beautiful children in the world and I can not just simply accept that I might never "see" them grow up or graduate or get married or have kids. I am 32 years old and in no way am i ready to just give this up without a fight.I have way too many things that I want to do still and places I want to see. Its hard for people to understand that what I have is an actual disease because you cant tell just by looking at me.I have told my family of course and a few close friends but other than that I am choosing to not tell people I dont need to because the last thing I need right now is pity. My family finds this difficult as well and they are dealing with this in their own way but I find it difficult to explain to people that arent in the same boat how it feels and how that sense of panic overwhelms you until you just cant think about anything else but the tihngs you would regret never doing. There is not a lot of information about this disease and basically because no one really tells you when you could become blind or how the disease progressess I feel like a walking time bomb.Im scared to death when I go to sleep that I wont be able to see when I wake up and then I am so grateful when I wake up and realize that I have another day.If this experience has taught me anything so far it is to live YOUR life with no regrets and to make the most of every day. Because you just never know. I wish everyone that is dealing with this disease the best of luck and think positive results:) I would love to hear from anyone that would like to discuss their experience with me or can offer any advice on coping or anything else related.Thanks
Re:Newly diagnoised with macular dystrophyPosted by cl3113 on 12/8/2009 at 3:23 PM
My vision six months ago was corrected to 20/100 and 20/100+ and I'm using two pairs of glasses to function. My retina specialist anticipates my corrected vision will decline to 20/200 and /or 20/400, 20/400 is my uncorrected vision in my worst eye. I am a 50-yr old Caucasian, red-haired blue-eyed female, was diagnosed April 2008 with Fuchs' Corneal Dystrophy and macular degeneration, but told I wasn't old enough to experience vision problems from these two diseases, I was 48 yrs old. I went for a free evaluation for Lasik or RLE to correct my vision to a better state when I was informed I was not a candidate for these procedures because of these diseases. I saw six specialists (retinal and corneal) who informed me that I was not old enough to experience any symptoms from either disease -- that I should not be driving ... they couldn't even get right which disease was the primary. I understand medicine is a science, but, what was I supposed to do??? No one had an answer even though everyone of these specialists saw both diseases, only treated me like I was crazy and suggest I return in 20 years when the diseases progress. Well, I now have a group of 3 wonderful doctors who are helping me through this crap and working with each other. I am losing my vision due to a form of macular degeneration, cone dystrophy (a form of RD?), but have been assured I won't go completely blind in the black. I've had both eyes laser repaired for retinal lattice, a small hole and slight tears, which may stimulate both diseases into full progression, but I will not go blind in the black due to retinal detachment. I take an eye supplement (vitamin) twice daily due to a possible 25% slow down in the disease progression - what do I have to lose by trying? Every week and sometimes every day is a vision decline and another adjustment ... I count my blessings for the gradual, though quick, declining of my vision so I can adjust, even though many times it is a daily adjustment. Probably the hardest adjustments come with not driving and secondly having to admit to those around me that I need help (with anything), since I've always been very independent. I have reared two children on my own, due to a husband who abandoned us. I've always worked hard and done what needed to be done to make it in life; I've been the one who made it happen and the one that everyone could count on to help ... so asking for help or admitting I cannot do something is extremely difficult! Rest assured, I'm fortunate to have supportive children and I have a wonderful boyfriend, soulmate - I count my blessings and do not take what we have for granted. As for information, I'm in the same boat as others. I've been working with our local institute for the blind and deaf and the Dept of Rehabilitation. They are awesome and can help with the low-vision needs and things we must learn. To all of you, I understand and look forward to whatever suggestions and help you may have to offer. The process is not easy or fun, but I have a wonderful soulmate, children, friends, siblings and a beautiful grandson to enjoy, so I don't have a choice but to work through the challenges, depression and adjustments.
Re:Newly diagnoised with macular dystrophyPosted by tomasrobert12 on 12/14/2011 at 3:20 AM
It's a good idea to be aware of the quantities of d vitamin within your bloodstream. You'll be able to ask your doctor to carry out these testing. And when you feel that you have d vitamin insufficiency taking these tests is essential. These tests will show should you be suitable after which it is possible to confer with your health care provider about this. Whether or not the concentrations of vitamin d are higher or lower do not forget them simply because they could result in some other extreme health complications. You should look at the wellness shape from time to time following you incorporate d vitamin dietary supplements in your eating strategy. We have already mentioned the advantages of d vitamin and we have to say that it can be really great for the hypertension; and likewise in the prevention of some serious diseases like type 2 diabetes, brittle bones and distinct types of cancers etc.
Re:Newly diagnoised with macular dystrophyPosted by tomasrobert12 on 12/14/2011 at 3:21 AM
It's a good idea to be aware of the quantities of d vitamin within your bloodstream. You'll be able to ask your doctor to carry out these testing. And when you feel that you have d vitamin insufficiency taking these tests is essential. These tests will show should you be suitable after which it is possible to confer with your health care provider about this. Whether or not the concentrations of vitamin d are higher or lower do not forget them simply because they could result in some other extreme health complications. You should look at the wellness shape from time to time following you incorporate d vitamin dietary supplements in your eating strategy. We have already mentioned the advantages of d vitamin and we have to say that it can be really great for the hypertension; and likewise in the prevention of some serious diseases like type 2 diabetes, brittle bones and distinct types of cancers etc. http://www.vitaminddeficiencyonline.com/
Re:Newly diagnoised with macular dystrophyPosted by bhavesh65 on 12/14/2011 at 11:27 AM
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Re:Newly diagnoised with macular dystrophyPosted by lendee on 2/1/2012 at 10:35 PM
Yes, I would like to know how your doing know, today 02-01-12. I just was told i have macular dystropy i had my vision checked because i was seeing waving and blurry. i had my vision checked last may and had a healthy macula. I was told to go back if my vision gets worse. So what just sit back and wait??
Re: Newly diagnoised with macular dystrophyPosted by bluenoser100 on 6/19/2013 at 8:18 PM
Hi to any one with Fuch's Corneal Dystrophy let's chat :) I had both eyes done DASEK which is a partial corneal transplant. I had cataracts off with the surgery in both eyes. I seem to be cursed as still can't see very low vision. I then had YAG to take secondary cataracts off./ I have a face book group with 265 people male and mostly female. I know there are several online groups. If you have any questions ask. I have 20/400 vision since the graft did not fail I can't get a second cornea. I tried too start group here but I can't find it. No one can tell me why I still can't see. I have vitreous gel that has lost it's color but no tumors.No one has answers for me. As a result of no depth perception I cut all 4 fingers and thumb off in a wood chipper 2 years ago right after my surgery's. I can't afford a voice activated thing for my computer.I can talk to any one interested. Halo's around lights and night driving gets bad my driver's license was revoked just before the surgery. My name is Barbara
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