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Living with Dystonia

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spasmodic torticollis
by: Donna on Tue, Jun 02 2009
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I lived with this form of dystonia for 15 years before my diagnosis. I tried chiropracters, biofeedback, accupuncture and even a very uninformed neurologist who told me it was pyscosomatic. When I finally found a neurologist who specialized in dystonia it was like a burden had been lifted. I receive injections of botox every 3 months and am relatively pain free. Without these treatments the pain is excruciating and unrelenting. The problem I am encountering now is the insurance is cost prohibitive and the dystonia foundation will only assist if I am substantially below the poverty level. If you have this disease know there is treatment for it and pursue it.
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Comments
  1. Tue, Jun 09 2009
    Bless you, and I can only hope you didn't go through the pain I did for that long. I can't tell you what I would have done, if so. I posted the recom...Read

June 2009

  • Laine - by LNB - (Tue, Jun 09 2009)
    I have had cervical dystonia for over 12 years. Though I tried several oral medications and Botox injections, 1,800 mg of Neurontin divided in three doses per day, was the only thing that worked. [more..]
  • My 5 Year Old son with dystonia - by T L Blessington - (Mon, Jun 08 2009)
    It started Dec 2008. Twisting to the right and right arm completly twisted and then screaming. This is every time he goes to sleep. [more..]
  • Cervical Dystonia - by MCB - (Wed, Jun 03 2009)
    For 15 years, regular botox injections in my neck gave me relief for a rapidly degenerating life. I lived virtually symptom and pain free. [more..]
  • spasmodic torticollis - by Donna - (Tue, Jun 02 2009)
    I lived with this form of dystonia for 15 years before my diagnosis. [more..]

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