Blind and Visually Impaired Community
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4th visit to eye specialist, big negative eye changes but no answers. (self.Blind)
submitted by LizDeBomb
[removed]
angelcake 6 points 4y ago
Sometimes they just don’t know. My partner is legally blind, it looks like glaucoma but doesn’t respond to treatment. It started in his 30s and has gradually degraded. He’s had tests, surgery to relieve the pressure but no answers and no improvement. Its related to his optic nerve but that’s really all they know. He’s probably going to be completely blind in another 5 years.
I know this is not what you wanted to hear but sometimes medicine does not have the answers that we want. 😢
I know this is not what you wanted to hear but sometimes medicine does not have the answers that we want. 😢
ABlindManPlays 3 points 4y ago
I'd send out some feelers to other eye doctors. I trusted my eye doctor for years, kept getting new glasses that would fail me within a few months, and it kept going until I moved and had to find a new eye doctor. They saw the problem, realized it was out of their depth, and sent me to another doctor who diagnosed me with advanced keratoconus. By the time we caught it, it was too late, and I am officially blind as of the beginning of this year.
Can't hurt to try. Even if they aren't in your area, maybe they would be willing to give some leads.
Can't hurt to try. Even if they aren't in your area, maybe they would be willing to give some leads.
BrailleNomad 3 points 4y ago
Do you have any other symptoms? Either visual or general body symptoms? Does anyone in your family have any visual impairment or anything like that? Is your vision worse at night?
LizDeBomb [OP] 1 points 4y ago
I have a perivascular space in my left basal ganglia region, and a history of migraines, as well as mast cell activation disorder, chronic anemia, asthma, bipolar, ADHD, and PTSD. My uncle had glaucoma and my father had cataracts, but other than that all was normal. My vision is almost non-existent in low-light, and is markedly worse at night, to the point that if I had any choice but to drive I’d quit completely.
Edited to add: I have floaters, some double vision, but most notably (to me) is that pieces are missing. Like if I look at a stop sign, pieces of each letter might be missing completely. I had a visual field test which showed degeneration of my perephrial
Edited to add: I have floaters, some double vision, but most notably (to me) is that pieces are missing. Like if I look at a stop sign, pieces of each letter might be missing completely. I had a visual field test which showed degeneration of my perephrial
BrailleNomad 3 points 4y ago
I would echo /u/ABlindManPlays suggestion to see a different specialist. You have some symptoms of one thing and some symptoms of another. It’s possible you may have a couple of different things going on. You could also try posting this in either the ophthalmology or optometry subreddits, but I’ll warn you now that the optometry subreddit tends to be a bit...harsh...sometimes.
GinAndBitterLemon 1 points 4y ago
I just took a look at Optometry. Eesh, I see what you mean.
BrailleNomad 2 points 4y ago
Yep! They are not the friendliest bunch!
-shacklebolt- 1 points 4y ago
Sorry no medical questions on this subreddit.
LizDeBomb [OP] 2 points 4y ago
Its not a medical question, I’m not looking for a diagnosis. I’m looking for support as I go through this.
happyforyoubutami 1 points 4y ago
If you have the resources, you may want to look into getting a referral to Massachusetts Eye and Ear Hospital— it has experts on many many eye conditions who may be able to help diagnose you. Many people come to Boston to go to this hospital.
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