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Forum Name: Neurology Topics

Question: when I stand up my body contorts for a few seconds.


 ren0226 - Fri Mar 27, 2009 2:30 am

Ever since I was about 11 when I stand up my body contorts for a few seconds. It only happens when I stand up and start walking. Or if I'm standing still and then move suddenly. When its at it's worst, I stand up and walk then the left side of my body kind of... contorts. It starts at my foot. My toes will curl then my ankle bends inward. My hip juts out and then my wrist curls inward and my fingers spread apart and they curl. Then my left cheek will tighten as if I am snarling and my eye will twitch. It only lasts for about 10 seconds but it is very embarrassing in public. I have learned that if I stand up and then stay in place for a few seconds it wont happen. I can feel it "flaring up" and then it passes. If it goes to the full contortion and I try to walk it off it's worse and my arm will kind of flap around. And if I try to speak my speech is slurred. Once, I was trying to fight it off and my friend noticed for the first time ( I usually hide it pretty well ) and she looked at my eyes and said that I looked like an empty shell. My eyes completely unfocused and she said I looked similar to a person that was mentally handicapped to put it lightly. I once asked a doctor about it when I was 13 and tried to show him but it wouldn't happen when I wanted it too. He blew me off. I don't have insurance so I can't go to a doctor about it now so I came here. I have no idea what the problem could be. Any ideas?
 John Kenyon, CNA - Sat Mar 28, 2009 8:52 pm

User avatar Hello --

You've been dealing with this for about ten years. That's way too long for something this potentially serious to be allowed to continue. While it seems to be stable (not progressing or getting worse) it must be very difficult to manage. And with friends like the one who made the comment about your eyes, well, people can just be awfully cruel.

What this sounds like is an odd form of partial seizure, possibly due to a lesion on the right brain, and triggered by effort. This is very unusual, and you really need a detailed neurological workup to find out why this is happening, what can be done to correct or manage it. If you can't afford to pay there has to be some way you can get attention for this. Possibly (and this is something I'd rarely if ever suggest normally) you could present yourself at an emergency room and explain this has been happening. Later, when you're admitted and the history is being taken, tell them it's been going on for a long time. They have to treat you even if you can't afford to pay. It's a devious way of getting it at least evaluated medically, but desperate times often call for desperate measures. What I've suggested isn't something I'd want anyone to do for just anything, but it's being done all the time anyway, often for very non-serious things, so if necessary, this is one possible way for you to get some initial insight into what's going on. You'll also likely be able to get referred to a free or sliding-scale clinic for followup. This is too serious to just let go. I can't emphasize this enough. It's too odd and too long lasting to be something simple.

I hope this is at least somewhat helpful. Please try and find some way of having it medically evaluated then follow up with us here. We can't diagnose anyway, and I wouldn't even hazard more than the guess I threw out above. This needs face-to-face, hands-on, real time attention.

Good luck to you! Please stay in touch.
 maniak2009 - Sat May 09, 2009 3:32 am

Hi,

I have pretty much the same condition and ive also been battling with it for 12 years. The thing is i usually know that if at this particular moment i make any movement the episode will trigger. I usually have to stay in one position for a few seconds for that moment to pass. Sometimes these episodes happen very often and sometimes not. I think they are directly related with stress. I control them more often than not however if a full fledge episode triggers in a sitting position i am forced to hug my legs and both my hands and feet are curved inwards and twitching . In a standing position i am forced to bend halfway forward my hips jutting outward, with the whole of my body twitching and flailing. However at all this time i am completely conscious trying to command my body to stop. A smaller episode usually makes my right foots big toe curve inward and right hand bend inwards.

However the strange thing is that, similar condition also happens with my siblings. That makes me think this problem might be genetic. All three of us had seizures within 3-6 months of our birth. We were given phenobarbetone (i hope i got the spelling right) for one year.

I got an electrolyte check up recently and it was normal however potassium was on the lower side.

Recently i've had nerve twitching also. However the nerve twitching usually (not always) subsides pretty quickly. We visited a doctor but couldnt come up with any thing. tests seemed normal. Could you please advise us how to proceed.
thanks in anticipation.
 Jadd - Sun May 31, 2009 3:20 pm

Glad to see I am not alone here! My DR sent me to the ER to get a CT scan and it came back fine. I cant seam to pinpoint anything that causes it. My toes curl, my foot points, my knee raises up, my back tightens, my chest pulls my shoulder to my face, makes it hard to breathe, my fingers curls, arm pulls my wrist into my chest. All at the same time, only on my left side, and only for 10-15 seconds. Yesterday I had 24 of these episodes, today I am having more. This has been going on for almost a week now. ANYONE have ideas?! The ER doctor said I was fine and sent me home, even though he saw me have one.
 anujzingh - Tue Sep 08, 2009 4:23 pm

the same thing happens to me also. Its been 7- 8 years, but i think this thing is growing though slowly but it is. In the begining i used to get these kinda attacks only when i used to change my posture like while i was about to stand up. But now it has become frequent, doesnt require any change of posture and happens any time. And i am finding problems while opening my mouth aswel like while speaking. Unable to understand what it is. Is it the begining of paralysis or what ?? Even doctors and tests are not showing anything. Please help me and suggest what should i do.

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