Dystonia Bulletin Board

I am so sorry that your family is going through this. I had problems since I was 2. But didn't get a diagnosis. Then when I was 21 I went to the eye doctor and she said to see a neurologist. I went through a lot of testing - MRI's and even psychological stuff. I have been to many specialists. UPMC and even the Cleveland Clinic - but no luck. Finally when I was 25 I had a correct diagnosis. Generalized Dystonia - which means it is through out my entire body. I am on medicine and get botox injections in my eyelids.

It does sound like your daughter could have a form of Dystonia. Just keep looking into other neurologists, there are ones that specialize in Dystonia - mine does. Good luck to you & your family!!

God Bless You!!