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DYSTONIA(TORTICOLLIS)

Sherry

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I was diagnosed with Spasmodic Torticollis 3 years ago and have been undergoing Botox treatments every 3 months since, along with does of Klonopin (I take them at night) and Tramadol for the pain during the day. LET ME BE TRUTHFUL WITH YOU: This will never go away, so stick with the Botox, which relieves the pain and spasms significantly for quite awhile, but you may need to go on disability if it persists. I am not that bad yet. They say it takes 5-10 years to get that way and believe me my heart goes out to you. Doctors just don't seem to understand that Vicodin, tramadol, Ultram and other pain medication DOES HELP US! (provided we don't drive). It gets me to the point that I can work and do what I need to do. If you would like to contact me for more information, my email address is rsherry@netzero.com and I would be more than happy to correspond with you. THERE IS HOPE! There is now surgery that is quite successful, I understand, depending on what form of Dystonia you have and I am currently looking into it myself. There is a collar you can also wear: here http://www.ycyhealth.com/NeckTraction_index.shtml This may also help you, although it could be an embarassment to you in public - BUT WHO REALLY CARES. If you are in that much pain, do whatever it takes to relieve it. I have even order drugs online without a doctor, and believe me, without those, I would die. Please contact me if you need to. God bless you and I will definitely pray for your condition. Sherry

 


   
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