Dystonia Society


I was diagnosed with SCA (Spino Cerebellar Ataxia) about 20 yrs ago, then diagnosed with Dystonia about 15 yrs ago, can't really remember. I WAS having Botullinum Toxin Injections (Botox) every 3 months, which did help but I moved so now take trihexphenidyl pills which are a muscle relaxant, I want to change these as I've been on them for years. My prof of Neurology suggested I go back on Botox so we'll see.

Keep smiling 😀Berejena

3 Replies

Well hello Berejena!

I hope the shift back to Botox treatment helps... I've not tried meds but the Botox helps - it ain't a cure but it takes the edge off my blepharospasm

All the best



Hello Berejena i have dysphonia a form of dystonia hope your meds work for you this condition really is a flipping challenge good luck

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I have Generalized Dystonia which includes Cervical Dystonia which is usually the most painful. I tried Botox injections in my neck at the suggestion of my neurologist - big mistake. The Botox just weakened my neck muscles and caused even more pain I had trouble holding my head up, and for about a month it felt like I had a pinched nerve. What ever happened to, "but first do no harm"? When I got the bill it added insult to injury.

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