Guest guest Posted December 19, 2005 Report Share Posted December 19, 2005 Laurie, Remember Figgy? She has dystonia and takes sinamet--gets a lot of help from it, though as I recall in her case it took a long time to titrate the dose for maximum benefit. Seems like I've seen dystonia mentioned on the UMDF site along with other movement disorders associated with mito. Years ago when we were at the NIH I met a woman who had primary dystonia. She had constant whole-body writhing movements, almost serpentine, though her arms were the worst. She was around 40 but lived in a nursing home because she was unable to care for herself. Very sad. Barbara > I have just discovered an article about Dystonia that it mtDNA > connected with a defect in complex I. Let me know if you have a defect > in complex I and had genetic tessting done. I will then send you the > article. I have not shown the article to my neuro, but since at least > 4 members of the family with mito have this defect, I'm hoping that > this might give us some answers. One of the drugs used for dystonia in > sinamet, but there are also others. The neck is one of the most common > areas of the body affected by dystonia. > > These are just some of my thoughts, since I am not a doctor. > > laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2005 Report Share Posted December 19, 2005 Interesting idea! One defect offsetting another. Let us know what your neuro thinks. B > Yes, I do remember that Figgy took sinamet. > > The defect that we have is homoplastic, not heteroplastic as the > article mentions. I was trying to reason out why we had not had more > severe symptoms earlier and then remembered our Euler Danolos Syndrome > that allows our tendon's to stretch more than normal. I am anxious to > run this by my neuro in Jan. > > laurie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2008 Report Share Posted March 6, 2008 My daughter was diagnosed with cervical dystonia about 1 1/2 yrs ago and it has been a big wake up call for our family. Her symptoms are severe neck muscle spasms that never stop so they pull her neck and head sideways. This started out of the blue one beautiful summer morning. She is in incredible pain and we finally, after months of specialists and tests, found the right place for treatment, by ourselves, on the internet. She now goes for botox injections at a movement disorder clinic at univ. of med. and dentistry nj. She is getting much bett. No cure, unfortunately. But, she graduates from college in May!! Yeah!! So, listen to your doctor. Sound like a very smart one. The ativan is the first line of treatment that my daughter used besides the botox> Bonnie BIt's Tax Time! Get tips, forms and advice on AOL Money Finance. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2008 Report Share Posted March 6, 2008 My daughter was diagnosed with cervical dystonia about 1 1/2 yrs ago and it has been a big wake up call for our family. Her symptoms are severe neck muscle spasms that never stop so they pull her neck and head sideways. This started out of the blue one beautiful summer morning. She is in incredible pain and we finally, after months of specialists and tests, found the right place for treatment, by ourselves, on the internet. She now goes for botox injections at a movement disorder clinic at univ. of med. and dentistry nj. She is getting much bett. No cure, unfortunately. But, she graduates from college in May!! Yeah!! So, listen to your doctor. Sound like a very smart one. The ativan is the first line of treatment that my daughter used besides the botox> Bonnie BIt's Tax Time! Get tips, forms and advice on AOL Money Finance. Quote Link to comment Share on other sites More sharing options...
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