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Neuromuscular Diseases Message Board

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Hi! I am so glad that I have found someone else with similar symptoms. My son is six years old and his right arm began shaking/twithching about 6 months ago. Sometimes it would shake for 2 hours. Now the shaking has moved to his whole body and shakes for 1 - 2 hours. He has seen a neurologist but only about his arm. He goes back to the neurologist tomorrow. his muscles are sore after the shaking and he can tell that it will happen right before he begins to shake. do you have any advice? The emergency room doctor gave us a presc. for valium, but i have not given it to him yet. his vision also goes blurry during the shaking. are these symptoms similar to what you have? Any information that you have will be greatly appreciated. Thanks
Hi Everybody, I'm new here and this is my first post.

I'm glad to see that I'm not the only one with this set of wacky symptoms. I read AngelofLight's description of symptoms and it seems very similar to mine. Mine started 14 years ago and woke me up out of my sleep. It was the sensation of shaking deep inside my body that I could only really perceive when I was laying in bed. I also noticed a little twitch here and there but nothing major at the time. I had a brain MRI and EEG which ruled out MS and Epiliepsy. It eventually went away (shaking took about 6 months to leave).

Over the years I've had the twitching and cramping come and go. Seems like the twitching has gradually replaced the cramping. I've also had periods when it calmed down and did very little. Sometimes my calves would twitch so much that they felt like they were "bubbling". The twitching involves every part of my body including recently my face (lips, eyelids, cheeks, neck). I've also periodically experienced the pulsing, the vibrating, crawling, burning, dizziness/vertigo, and chest pain sensations I've seen others mention.

I've been to see at least 4 neurologists in the past 14 years and no test has revealed anything unusual. I went to John's Hopkins and saw an MS specialist last year. They drew 18 vials of blood and did an MRI of my upper spine and a lumbar puncture. They also used a newly developed machine can confirm whether a patient has ever had an incident of optic neuritis, which is common in MS. All tests came back negative except my knee reflex indicates that something is a little off. The doctor assured me that whatever I have is mild and that I may never know what it is.

This past week I woke up out of a nice sleep to find my head, arms and legs periodically jerking (it's kind of like an orchestra- now the jerking joins in to play with the twitching). This really scares me because it is a new symptom.

I should also note that years ago I was diagnosed with autoimmune arthritis associated with HLAB27 gene. It seems like when I have a flare of this, that the twitching and all other stuff escalates. My arthristis condition is not very bad and the Doctor treating it (along with every written thing describing it) insures me that no neurologic symptoms should accompany it.

Anyhow, I'm debating calling the doctor but I almost feel like a lunatic hypochondriac with the most bizzare set of symptoms. I think I should probably have a test that measures the electrical activity in the muscle itself. Has anyone had one of these?

Thanks for listening to me blather on and on...I appreciate it.

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