Myclonus or Myclonic Dystonia
I was diagnosed with Cervical Dystonia and writers cramp in January 07. Since then it's moved to my legs at times, my face, my feet, my shoulders, and my torso. My last dr. appointment was with a neurologist and he referred me to a MDS (I've seen 3 others at various times ) because he felt I was generalized...come to find out the MDS he reffered me to only specialized geriatrics and seeing that I'm only 29 I didn't qualify. Anyway I've been reading up on Myclonus or Myclonic Dystonia and this sounds a bit like me. I was told at Baylor University in Houston, TX that the DYT1 gene was negative...could my dystonia still be hereditary? I read an article on the wemove website and it mentioned something about DYT11 gene. Any ideas? How DO you find out where your dystonia came from?
Tags: dystonia
Replies to This Discussion
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Permalink Reply by homebody on -
Hi BDrake. I'm still looking for a diagnosese. i was told June 30 I have Tardive Dyskinesia of the tough musele. This was by a dentist/md. I've been jewing my tough and the inside of my mouth for many months now. In 2004 I lost control of my neck musele. Two weeks later I lost the musele control in my right eye. Now my two end fingers on my left hand have a life of there own. I was told in 2004 I have a Conversion disorder. Which means it's all in my head. I have seen a mds in st Louis Mo in April 2008. She told me this did not look or act like Dyskinesia. I'm going back at the end of july to see a neur. eye spec. and neur. pysch. doc. The dentist/md said it was the meds I take for Bipolar Disorder. Past and persent. I Can't stop my meds.
So I'm looking for anwsers to this mess. I have 3 kittens and when my face starts to on it's own the cats can't help them self. I do have a sense of humor about this. When the right eye musele went, I became cross eyed. I woke up and had two flower beds. I did not help find you an anwser but it feels good to type to someone in the same boat.
Homebody
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Permalink Reply by BDrake on -
Dear Homebody,
I am truly sorry for what you are going through. I was told at one point, it was all in my head too. I don't really believe that. I try to keep an open mind about it but I DO believe mine is from organic causes. I also have ACM (Arnold Chiari Malformation) and therefore believe mine could be caused from that. I do belive and have seen first hand where stress has triggered spasms and tremors, but that is not evidence enought for me to belive it's psychogenic or a conversion disorder. Either way; what helps me is to tell myself it doesn't matter where it came from. I have it. So the more I adjust myself and focus on acceptance and finding/knowing my limits the happier I can be...limitations and all. I also sympathize with you as far as getting a diagnosis. I know for me it was a long journey and I still have questions gone unanswered but for now I've stopped pursuing and have just decided to live my life one day at a time and deal with the inconviences as they come. I do know I have an easier time dealing with the fatigue and struggling part of the spasms than I do the pain...when it HURTS is when it's most difficult to have that acceptance attitude. I am new here but have heard great things about this site from others. I hope you find comfort and answers. Keep me updated.
~Becky
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