Getting an Official Diagnosis for VSS

I have! I go to Radys children and my doctors have been trying to find out how it works, none of them knew of it before I spoke to them but they've all found an intrest and I think it's great, they think it might be connected to hormones, I've had multiple MRIs and EEGs everything is normal there as well as multiple eye exams were still not sure how it works but we're working on finding out

Not dx yet but my neuro is taking me symptoms seriously and we are trying some things to help hopefully.

My old neurologist has heard about it and knew a little bit about “snowy vision.” (As she described it) But I haven’t tried to find someone who deeply understands it

My neuro ophthalmologist at the Washington University eye center.most all my doctors before him had never learned about it.