Myoclonus

I developed myoclonus a year ago after I had surgery. Propofol was the drug used for general anesthesia. Myoclonus is a side effect of this drug but of course no one will identify that as the cause of the myoclonus. Anyone with similar experience? Thanks

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Jill, I have myoclonus, but not caused by anesthesia. Actually I only have ideas what might be causing mine. I have celiac disease and myoclonus can be associated with it. However, one of my worst attacks was at a gluten free event when I wasn't even eating. Some smell in the air set it off. Still haven't figured out what it was and my spasms got so bad I had to leave. When I left, it subsided. Ataxia can set it off. Not sure where the ataxia comes from as it seems to be sensory in nature. As I understand it, and I am not an expert in this regard, we have 3 senses which help keep us balanced - vestibular, the body being aware of its position in space and vision. As long as 2 of the senses are working one stays balanced. When my eyes are closed, I cannot stay balanced. In a museum, grocery store or walking slowly, my body seems to loose it, balance goes off and myoclonus gets going. My doctor mentioned some blood tests I could have for nerves, but says they are expensive. I have not answered your question, but I think it is good to share experiences.

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Thanks for sharing your story Carolina. The most frustrating thing for me is not knowing what caused the myoclonus. I'm probably going to have to accept that I may never know. I have similar balance issues and have "asteriskis" which is negative tone so Iook like I'm sagging and may fall. That seems to alternate with the positive tone/jerking movements. At its worst I wound up InThe ER having 20 spasms a minute for 5 hours. Yikes.

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Jill, I assume you are seeing a neurologist in reference to your myoclonus. Have you had a brain MRI? The blood tests my doctor mentioned include gliadin, acetylcholine receptor ganglionic, ganglioside, myelin associated glycoprotein and sulfatide. Identifying the antibody does not always help in treatment according to my MD. I have not had these tests yet, but may. It depends on the next visit with my doctor. Do you have autoimmune diseases? Sometimes surgery can actually get autoimmune diseases going. These are some things you could bring up with your MD. I agree with you, that it is important to know what is causing your movement problems, certainly if they continue. Also, I would suggest checking out the organization called We Move. If you put that name in a search machine you will have no trouble finding it. You might also try posting in other groups to hopefully get more responses.

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Thanks for the lab info. I do see a neurologist and the MRIs & EEGs were negative. The myoclonus preceded the Hashimotos disease, an autoimmune disease that causes hypothyroidism. There is a Hashimotos encephalitis that would cause myoclonus but I don't have other symptoms of that. I'll check out We Move, thanks.

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We move is a great site....my 19 year old has tardive dystonia from induced medication and I've been doing all the research I can on this because I had never heard of it until this past year when my son was diagnosed. Good luck and God bless

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Jack, the acupuncturist I see has a daughter with dystonia. She said that she uses acupuncture to treat the muscle spasms and that this is usually successful. Good luck.

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