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Originally Posted by color
No, I've never seen a movement disorders specialist yet -- I'm expecting an update from my NIH neurogeneticist soon, so maybe he'll recommend this as my next step. So far, all I've been focusing on is Ataxia specialists, since I was given the "SCA, type unknown" dx back in 2005. Thanks so much for the idea, though!
Take care,
P.S. Johns Hopkins, you say?! They have a fabulous Ataxia center down there, under Dr. Joe Savitt. I'm not a patient there, but I attended one of their support group meetings last month. Anyway, I'm sure that the two groups work closely together (that is, Ataxia and Movement Disorders), since hereditary Ataxia is a type of movement disorder...
P.S.S. Where in PA do you live, if you don't mind my asking?
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I am not familiar with Ataxia, what kind of disorder is this, and what are your exact symptoms from it? I started botox 4 months ago and it really is helping me. As wonderful as JH is, I don't think they are certain on what all my neurological problems are and how they are connected to each other or not connected. I am sure you know how frustrating it can be! How did you like the support group, was it helpful? Do you live near Baltimore? I live in North wales--PA, about 35 miles from philly. take good care