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Spinal Myoclonus/Spinal Dystonia
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Spinal Myoclonus/Spinal Dystonia

Hello,

I was diagnosed little less than a year ago with Spinal myoclonus, a syndrome where the muscles around the spine twitch or convulse. I've been through EEG, EKG, MRI's, X-rays, and many other tests to see what the causes may be. But nothing can tell me what is happening. The sense of helplessness is unbearable. I've learned to control these spasms by tightening my core. This causes severe pain in my lower to mid back. Everyday of my life for the past year now has been spent in pain. I'm only 15, going on 16. I spasm about 6 times a second when I am in an episode. These episodes are extremely embarrassing, painful, and bothersome. I've taken several medications for this, most of which cause very bad side effects, and which give me minimal relief. I've also been given botox injections in my back in the hopes of relaxing the muscles. They told me that it probably didn't have to do with the spine, nerves, or brain due to the fact that all the tests come back clean. I just read an article for a medical magazine saying that myoclonus is caused by a trauma to the spinal cord. I'm very confused between what is true. Does anyone have anything similar to this? Or know of someone that does? Please, I'm tired of this. I want my life back.
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Hi. Hope you are having a better day.  I have spinal myoclunus dystonia.  It is very hard to live with. The pain is unbearable. and the dystonic positions your body is forced into are ugly and painfful.  You are not alone, my friend.  I am going through the same thing.  it's a shame that you are so young.  I am 56.  take careand rest.  Poodlelady
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