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Dystonia - Anyone?

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Sorry to hear your daughter is having such a difficult time. 

I taught a girl who had neck dystonia her muscles were so tight her neck was held to one side all the time. She was treated with Botox and wore a body brace which did improve it and relieved some of the discomfort, if I remember correctly she had injections about every six months

hope you can find some answers

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Thanks Katybug and dancer 65!  I'll definitely read the link, tons of information!  The botox, too.  I have ready that quite a few people have success with that.  I'll give everybody an update after we go to Stanford the early part of this week.  Just trying to maintain until we go.  The two things that she has noticed in all this is that fatigue and adrenaline affect it.  So, we'll see....

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