Fuch's Dystrophy - anyone personally familiar?

[Ombligo]

I've been having eye trouble for awhile, primarily blurred vision in the morning and double vision for days at a time. Well, it has been diagnosed as Fuch's Dystrophy. From what I've read, there is no cure and is progressive. But I'm having trouble finding out what too expect.

If you have it, or are familiar with it, please drop me a PM. I'd like to ask a couple questions.

(I won't be seeing the doctor in the near term, and at $300 a visit (not covered by insurance, I can't afford to miss a day's pay and go in, just to ask a couple questions)

[Speedy]

I've never heard of it but I wish you the very best.

If I may ask, why are your medical visits not covered by insurance of some sort, now that you need it so much?

[dmann]

I cannot answer your question, but maybe some of the resources here will help.
https://www.nei.nih.gov/health/financialaid

I do believe there is a Dr and nurse staffed hotline where you may be able to get some basic questions answered. I know my mother reached out to them when she was diagnosed with macular degeneration.

Wishing you the best-
DM

[lost in space]

Best wishes on that, Ombligo.

[cbelt3]

Ombligo-
As the others pointed out, there *are* treatments. This is not a 'yer gonna go blind so give up' thing. They range from the weird sounding (use a hair dryer to dry your eyes out first thing in the morning) to surgical (Corneal transplants).

Also keep in mind that this is not a 'vision care' thing. It's a straight up medical visit just like any other medical problem. You may want to talk to your insurance company about that.

And best of luck ! My mom has macular degeneration in one eye, and Medicare covers her periodic injections (yes, into her eye.... ewww...).

[mrbigstuff]

This is probably a situation where the Internet is invaluable given your predicament. You can connect with others around the world who may have some solutions and answers to your queries. Have you had any luck searching for forums ?

[GuyGene]

I agree with mrbig. I found a forum on fibromyalgia, and it really helps those of us who suffer with this crazy mess.

[Ombligo]

Thanks all.

I've been reading on it, but nothing really talks about the longterm - does it lead to blindness? Is it painful as it progresses? etc..

I've been arguing with insurance, so has the doctor (him with multiple insurance companies) - can't get past it's the eyes. They hear eyes and say no coverage, maddening to say the least.

I've found one forum on it, but it seems to be pretty inactive. I'll keep looking..

[Acer]

Get out the policy, start reading, all this stuff has been considered well in advance by all insuring parties even if the Dave-in-Dubai who's answering the phone pretends it hasn't.

Thing is, the eye insurance won't cover anything they deem as medical. Our vision insurance is for corrective lenses and general eye exams only. Anything that requires more goes to medical.

[Buzz]

Was not aware/familiar w/ the malady at issue, but certainly am familiar w/ the process of websleuthing a myriad of ailments. Finding out, and confirming, specifics is very helpful. FWIW, online communities can be great for support, but I've found that the nature of reducing one's story to words, more often than not makes it, whatever "it" is, sounds worse to the reader(s) than the writer intended "it" to sound.

I'm gonna go out on a limb, but I'm pretty sure that if you call around to as many of the research hospitals as you can find, that at least a few of them will be able to hook you up w/ knowledgeable personnel that will help you get a better handle on your situation, before you incur the expenses associated w/ missing work. Eventually coverage may be an issue, is it medical, or vision... yada, yada. But before that bridge has to finally be crossed, you ought to be able to get more info from the research community that deals w/ your condition. Good luck.
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I've had pretty good luck "dialing for referrals" w/in the research communities for several medical issues over the years, basically just trying to garner info before embarking on a treatment plan. That way, by the time you do embrace treatment, you'll have a better idea of what to expect. Online communities may be a good place to reach out to, to seek referrals. A few hours of sleuthing to get a better handle on your game plan, is probably well worthwhile.