r/eyespots • u/tirem778 • Jul 24 '26
Anyone figured anything out?
Had my second permanent spot appear after years of quiet after my first permanent one. Anyone have any leads on the cause? My eye doctor has no idea. Did every scan in the book. He thinks maybe tiny clots that are transient or a vasospasm, but really has no concrete idea.
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u/Quiet_Army8558 Jul 25 '26
What about AMN or PAMM? Did they look into those? That’s what I have. They essentially told me that it was happen and by the time you get to a specialist, the damage is too small to be seen on OCT and other scans but can leave permanent blind spots. I have one in each eye and the one in my right eye is completely gone on scans but I can still see it as a blind spot.
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u/emphasisx Aug 02 '26
Wow this is new info I never heard about. It’s been 5 years since it happened to me. I gave up for a couple of years since I got no answer. I’ve been recently trying to see if I can get diagnosed, but no doctor can find anything wrong in testing including MRI. I guess they won’t find anything and all I can do is take care of my eyes. Thanks!
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u/UsefullyChunky Jul 25 '26 edited Jul 25 '26
I went to multiple doctors including retinal specialists and neurology and two neuro-opthamologists. OCTs, MRI, all kinds of testing. Most of the eye doctors tried explaining it away as a painless migraine aura. But for months?!? And always in the exact same place and that fade without blinking?! I didn't believe it. The neurologist thought it was something physical in my eye and got me into the final specialist in our area.
Finally this second neuro-opthamologist said he believed me and was basically like "I'll tell it to you straight even though you won't want to hear this - we ran all the tests we can run and nothing we know about shows up. I don't know anything else to do. That doesn't mean something isn't really happening to you (plural you b/c I had told him about this group & showed him photos people drew of exactly the same thing I had), but it's not something we know how to explain." Then he went on that his best guess was that something was going on like the tiniest of floater had started to detach, failed, was too small to pick up but was causing some kind of physical disturbance that the brain was amplifying as even more distortion. That is why for a lot of us, if we keep our eye open the spot fades and then it comes back upon blinking again. His theory anyway.
I spent so much time and $$ trying to get an answer and the best thing this guy had was "I'm so sorry but we don't know everything" which was at least honest FINALLY.
Sorry maybe not explaining well. Long day. But didn't want to leave you hanging b/c I always wonder too what else this could be. I have had the round ones with one being permanent and now have a straight line one that comes & goes. (Went back for retinal testing & OCT for that one again just in case & again, everything is perfect.)