Sometimes, I read something, and it all clicks.
This happened to me on Friday. I found this article on Friday, about a woman living with a rare sight condition, called visual snow syndrome. She talked of seeing static dots, flashes, floaters in her vision all the time, things I deal with every day but wasn’t sure what they were. She talked of thinking it was only her who saw them, and of night blindness, and I saw myself there too. Suddenly, the weird sparkly dots I see made sense. Suddenly, I understood what the floaters were, why they were even there at all.
It made more sense than anything Moorfields have ever said. And I’m becoming more certain this is what I have. It would make even more sense, as it is extremely rare, and that’s what I was, so rare I was an enigma to science. I would get it diagnosed, but Moorfields would probably take another five years. I’m not sure if its related to my failing retinas, or something is separate. But I’m more certain of this than the macular dystrophy. Sure, they’ve given me that diagnosis, and are like 95% sure, all assured by the top man in the field. But they’ve pulled this trick on me before. In 2018, they were 99% sure it was Stargardts, a macular degeneration, and gave me a signed diagnosis until they changed their minds two years later. So they may do the same to me again, change their minds when I go next time.
I know you’re not supposed to self diagnose. But everything matches. This visual snow makes sense. This is an answer I can cling to, not like the phantom shadows of truth Moorfields give me. If I am to live with this, I need to understand it, do my own research since they won’t bother. I think this is what I have, perhaps combined with the macular dystrophy. And the good thing is, that this condition looks pretty stable, so it might not get worse.
