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Graviity

688d

Has anyone gotten an official diagnosis for VSS? What kind of specialist did you see?

Top reply
    • Bellabeev46

      453d

      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

    • Bellabeev46

      453d

      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

    • a3k

      649d

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

    • Kofuku

      670d

      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

    • ToneE

      688d

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

      • Graviity

        688d

        @ToneE thanks, I’ll look in that direction. I’m also having the problem that most doctors I’ve been have just not heard of it before

        • particle

          679d

          @Graviity my neurologist diagnosed me! That maybe an easier way to start and I hope you can find your path. 🤍❤️💙💜🖤

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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