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    DYSTONIA

    Does anyone have Dystonia with MS? Experience, treatment, coping strategies? I am officially overwhelmed!

    #2
    I do wonder if I might have this. Are you diagnosed with dystonia? Has your doc prescribed baclofen or klonopin ?
    10/2005 AFP/ MS?later:TN
    later:ADEM/MS,
    5/08 MS IVSM, Copaxone

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      #3
      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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        #4
        Originally posted by Tia1 View Post
        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?
        I have muscle pain and stiffness from my neck to my shoulder. I don't know enough about dystonia to be certain. Haven't heard of Kepra. I will now have to google it, lol.

        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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          #5
          My symptoms are major, extremely painful spasms in various places of my body. They were bad enough to send me to the emergency room on three different occasions. Kepra is a medication used for seizures. Still trying to figure this out.

          I hope that you don't have it! It majorly sucks!

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            #6
            Could be Stiff Person Syndrome. Ask doc for a GAD65 blood test etc. I have it along with MS. Itís very rare and thus overlooked by docs.

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              #7
              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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