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Myoclonus


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#1 sillyken

 
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Posted 21 April 2008 - 08:01 PM

Hello,

I haven't been on for a while due to a debilitating illness that the Dr.s haven't been able to come up with a definitive diagnoses. I have been having seizure for the past two years. They have changed in the past few months in the way they present but in my reading the other day I came across this rare type of epilepsy where the muscles contract and then losen up. In the article the author says that people with Celiac Desease can be suseptable to this illness. This can happen many times in a row or once every few hours. I have had them last for hours. My seizures have been diagnosed by my Neurologist as nonepileptic or psychogenic. My Psychiatrist feels differently as do other Dr.s who have witnessed my seizures. My question is has there been anyone out there with celiac who has had these symptoms and has anyone been diagnosed with Myoclonus and how do you deal with it.

ken Ritter
Celiac Since 2004
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#2 Lemonsieur

 
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Posted 22 April 2008 - 02:14 PM

I was officially diagnosed with Myoclonus a few years ago ('04 or '05 I think). I don't have an official celiac diagnosis, but tested positive for gluten intolerance with Enterolab and elimination diet (in '07). The treatment plan the neurologist wanted to take made me really apprehensive (several horse pills a day) so I didn't go along with it, and just decided to deal with it and find some other answers. I think he had prescribed depakote. I had to stop taking martial arts.

Mine doesn't seem to be as severe as yours. I don't think I have full blown seizures (although I did have them as a child). Mine is a loss of control (and perhaps consciousness ) for a split second. It impedes my speech, and interrupts whatever my current action is. I am not aware of what transpires in that moment of time. It is like I short circuit for a few milliseconds. I once punched my wife in the face and didn't know it! Lucky she was understanding :) !

Since going GFCFSF I have had much fewer episodes. I was able to continue martial arts. They only seem to happen now when I am lacking in some nutrients. Such as not eating quite properly and then exercising, or some other activity that requires intense concentration or fine motor skills. The most recent experience happened a couple of weeks ago. I didn't really eat that great a breakfast, and when to martial arts class. I had episodes through out the entire class. Pretty disconcerting.

Don't give up in your search for answers and don't settle if you are not happy with what answers your currently getting. Good luck and please keep us informed of your progress.
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#3 sillyken

 
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Posted 22 April 2008 - 05:44 PM

I was officially diagnosed with Myoclonus a few years ago ('04 or '05 I think). I don't have an official celiac diagnosis, but tested positive for gluten intolerance with Enterolab and elimination diet (in '07). The treatment plan the neurologist wanted to take made me really apprehensive (several horse pills a day) so I didn't go along with it, and just decided to deal with it and find some other answers. I think he had prescribed depakote. I had to stop taking martial arts.

Mine doesn't seem to be as severe as yours. I don't think I have full blown seizures (although I did have them as a child). Mine is a loss of control (and perhaps consciousness ) for a split second. It impedes my speech, and interrupts whatever my current action is. I am not aware of what transpires in that moment of time. It is like I short circuit for a few milliseconds. I once punched my wife in the face and didn't know it! Lucky she was understanding :) !

Since going GFCFSF I have had much fewer episodes. I was able to continue martial arts. They only seem to happen now when I am lacking in some nutrients. Such as not eating quite properly and then exercising, or some other activity that requires intense concentration or fine motor skills. The most recent experience happened a couple of weeks ago. I didn't really eat that great a breakfast, and when to martial arts class. I had episodes through out the entire class. Pretty disconcerting.

Don't give up in your search for answers and don't settle if you are not happy with what answers your currently getting. Good luck and please keep us informed of your progress.


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#4 sillyken

 
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Posted 22 April 2008 - 05:53 PM

Thank You,

At least I'm not the only one. I tell you these have wiped me out. But is Myoconus an epileptic diagoses or is it a muscle related symtom?

Ken



I was officially diagnosed with Myoclonus a few years ago ('04 or '05 I think). I don't have an official celiac diagnosis, but tested positive for gluten intolerance with Enterolab and elimination diet (in '07). The treatment plan the neurologist wanted to take made me really apprehensive (several horse pills a day) so I didn't go along with it, and just decided to deal with it and find some other answers. I think he had prescribed depakote. I had to stop taking martial arts.

Mine doesn't seem to be as severe as yours. I don't think I have full blown seizures (although I did have them as a child). Mine is a loss of control (and perhaps consciousness ) for a split second. It impedes my speech, and interrupts whatever my current action is. I am not aware of what transpires in that moment of time. It is like I short circuit for a few milliseconds. I once punched my wife in the face and didn't know it! Lucky she was understanding :) !

Since going GFCFSF I have had much fewer episodes. I was able to continue martial arts. They only seem to happen now when I am lacking in some nutrients. Such as not eating quite properly and then exercising, or some other activity that requires intense concentration or fine motor skills. The most recent experience happened a couple of weeks ago. I didn't really eat that great a breakfast, and when to martial arts class. I had episodes through out the entire class. Pretty disconcerting.

Don't give up in your search for answers and don't settle if you are not happy with what answers your currently getting. Good luck and please keep us informed of your progress.


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#5 Fiddle-Faddle

 
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Posted 22 April 2008 - 07:21 PM

Please look into Lyme DIsease!

The dad of one of my students was only diagnosed with Lyme after he began to have seizures. And for some reason, Lyme seems to cause a kind of non-celiac gluten intolerance. There is a very active Lyme Disease thread here on this board, because so many here have been definitively diagnosed with Lyme.

Good luck!
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