Question about Dystonia

Hi. I am not sure this is the problem but I'm trying to figure it out. My son is 18 - for the past year or so he has started really twitching and shaking - it almost looks like a seizure. But it's mostly when he's stressed or upset. I have seen him do it on a few occasions when he's not upset. I have seen him start to twitch and I think, oh no, here it goes, because it seems to escalate and it's very hard for him. He's usually social and outgoing and involved but sometimes he gets really down on himself. Our doctor put him on celexa, (for depression and anxiety) and maybe it helps some but it's hard to tell. He called from college yesterday and said he's really having a hard time with it. His head twitches, his arms - it's quite a whole-body thing but it usually starts at his head. A counselor told him it's anxiety but he feels like it's not that simple because he really doesn't have that heavy of a load and he's loving college. I've been reading about dystonia and I guess it can have an emotional onset but I don't know that emotions explain it all for him. I have lupus and my birth mom has m.s. and I wonder if that could be a predisposition for something. I'd love some advice and direction. Thanks so much. - Kimberly

Tags: body, dystonia, family, history, lupus, movements, ms., neurology, onset, shaking

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Permalink Reply by Kimberly Nelson on November 6, 2009 at 12:11am: Thanks Beka. Yeah, I did let Greg do all the talking until the doctor seemed so casual with him. Then I said, here's what he does and what it looks like. My husband's been out of work a while so we literally don't have money for another doctor right now but we'll just have to work on it. Thanks tons for taking the time to reply.; ▶ Reply to This

Permalink Reply by lexiesmom on October 11, 2009 at 8:38pm: I am right there with you! My daughter was diagnosed 14 months ago with dystonia and I feel lost they have no idea the cause or how to treat it. Emotions are a factor but far from the only factor there are a few genetic markers they can look for and relaxation tech are always helpful. Dont stop searching, there are many site sout there with info, actualy that is what i am doing here trying to absorb soem info and get input. I can tell you to watch the meds they try him on many meds can aggravate dystonia symptoms,
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Permalink Reply by beka on October 19, 2009 at 3:18pm: How is Lexie doing ?? You may not find a cause, but symtoms should be treated. Have you gone to the Canadian Movement Disorder Society website to see the list of docs there ?

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Permalink Reply by ramona on November 8, 2009 at 4:28pm: Kimberly,
I very much understand the frustration with psychogenic and conversion disorder diagnoses, as I have been handed both of those myself, before being diagnosed with Generalized Dystonia and later having had DBS. One of our sons has episodes that are similar to what you say your son's are like, and it has been a difficult road with him. We have been told that he has Hyperventilation Syndrome and, according to the research we have done on it, that actually fits him pretty well. I am not at all convinced that this is not a precursor to a full blown movement disorder later on, but for now he does well as long as he manages his emotions and keeps them under control. Outbursts of anger are the WORST for him. He has also taken himself off of caffeine and that has helped a lot. I know this won't help much, but this is at least what we are doing with him, for now. (He is almost 17.)
Blessings
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