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dystonia in neck

Tina

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Regarding your message posted about your husband with cervical dystonia AKA spasmodic torticollis: I too have this muscle disorder, I was intitally diagnosed with CD a year ago and it has now affected other parts of my body as well. There is quite alot of info out there. First, I would make sure his doctor is a "movement disorder" neurologist. You can go to www.dystonia-foundation.org and find a doctor in your area. This site will also give you a wealth of info on the condition including treatment. Also check out www.wemove.org for info. and www.spasmodictorticollis.org for support groups in your area, this is also a site where you can post your questions and get answers quickly. These sites can also help your husband get disability if that becomes the case. It is very important to find others who have this so you know you are not alone. The key is to find treatment that works best for your husband. Don't be afraid to get other opinions but make sure they come from a movement disorder specialist. Please feel free to write me anytime. I am a 44 year old women, married 21 years with 2 teenagers and my life has changed dramatically in the last year. But I have a wonderful doctor, a supportive family, I'm in a support group and my faith in God keeps me going. Be aggressive in your search for answers. There is help out there. Hope this helps, Tina.

 


   
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