My name is Sandy and 9 years ago I started some type of movement disorder. Al neurological tests came back fine was told it was in my head, accused of many things such as faking and selling meds. Told me that I was addicted to what they prescribed, so I got myself off most everything. I was seen by many psychiatrist and psychologists and told that this appeared to be a Neurological problem and all the Neurologists here in Maine said it was conversions disorder. Finally I requested to see the movement disorder clinic at Mass General and started to see a few different dr's there and was told it could take quite some time to figure what I have since all testing has been normal. Upon research on my end and presenting it to my primary neurologist and her colleague, they both agreed that this is more than likely what I have. I am still supposed to continue care with them as they have me on Tegatrol and Klonapin. This was only a month ago. I would like to be seen here because their suggestion to me when I have any of my very painful symptoms (which is each and everyone listed) is to just ride it out while my body turns itself into impossible positions an I have non epileptic seizures daily. I just need help to get my physical life back as my mind wants to get it back in the worst way. I am only 43 and have been severely afflicted for 9 years.

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  • Dear Sandy, Your story sounds all to familiar to me in the beginning. I live in WI, went to Mayo, same story 15 years ago. Back and forth with every physchiatrist who said I needed a good neurologist. This went on for two years with me sitting in a chair having the attacks on end. Finally saw a great internist who listened and helped, later a few great neurologists. I was on Tegretol for years, it did help in the beginning but over time I worsened. I know take primidone, and sinement, and baclofen. I am completely stable. I will have terrible set-backs at times for short periods, but usually a boost in my drugs will bring me back. Keeping looking for a great neurologist, or internist you can trust. I will help in any way that I can. My personal email is grandmas16@gmail.com. You are not alone. Cathy

  • Sounds like Dystonia. There is something to be done to help you. Find out more about the procedure.

    I wish you well.

  • Are you referring to a procedure for Dystonia or Functional Dystonia? This sounds a lot more like Functional Dystonia because the tests come back negative, and therefore any procedures that work for Dystonia will probably not work for Functional Dystonia. Check out the website for one of the 3 the top neurologist in the world for Functional disorders, neurosymptoms.org

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