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TOPIC: New with Dystonia

New with Dystonia 1 month 2 weeks ago #4184

  • Julie
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Hi,I'm a mum to a young lady (19) who was diagnosed one year ago with focal Dystonia.she also has a learning disability, and would never be able to follow a forum and understand how to get help and support she needs. So I'm here on her behalf, searching for a way to make her life more comfortable.
We were told our daughter had focal Dystonia to her right shoulder, and it's ok,it's focal so it wont go anywhere else. But the doctor was wrong as it's now in both shoulders. Wherever I read about focal Dystonia people talk about it being in the hands. So I've not found any information on focal Dystonia in shoulders. My daughter has been given Botox twice. It helps for around 8 weeks, then the spasms are back. Her spasms cause multiple dislocations,so a lot of pain.can anyone relate to what is happening to my daughter?
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