Does anyone have Dystonia with MS? Experience, treatment, coping strategies? I am officially overwhelmed!
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DYSTONIA
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My doctor said he that I had it and unfortunately it goes with some recent symptoms that I've been having. He has not yet written it in my records. I'm hoping it's all just a really bad dream and I'll wake up.
Why do you think you have dystonia? what are your symptoms? I have been prescribed both of these meds and baclofen is the one I'm more comfortable with. He also prescribed kepra?
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Originally posted by Tia1 View PostMy doctor said he that I had it and unfortunately it goes with some recent symptoms that I've been having. He has not yet written it in my records. I'm hoping it's all just a really bad dream and I'll wake up.
Why do you think you have dystonia? what are your symptoms? I have been prescribed both of these meds and baclofen is the one I'm more comfortable with. He also prescribed kepra?
What are your symptoms? Does it cause you to have unwanted movements? I do not have any contortions.10/2005 AFP/ MS?later:TN
later:ADEM/MS,
5/08 MS IVSM, Copaxone
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At one point my neurologist thought i might be dealing with dystonia in my face, mouth/tongue, and neck. i was sent to the dystonia neuro of the practice. There was never a definitive answer given, I had a lot of atrophy in the tongue and facial muscles that they had originally thought might be dystonia because of the movement in those muscles. But the atrophy evidently might be the cause of the tremoring, spasm, etc.
I was already on the medicine to help with dystonia (baclofen and klonipin), but did discover I had some "tricks" I learned to make my symptoms lessen. Google "dystonic tricks" and see if there are any suggesttions for a "trick" for your particular part of your body. Since mine was my mouth, I found that putting a straw or toothpick in my mouth would settle down all the spasm and movement.
I believe they use botox for dystonia now, with great success. Where I was having my symptoms, they would not have recommended botox due to the problems I might have had with swallowing if botox had been used, so we just let it be.
Hope you find some relief and answers to what's going on with you.
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