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Neuromuscular In memory of Rose Marie.

Myotonia Congenita

 
 
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Old 04-29-2012, 10:05 AM   #9
litlebean
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Join Date: Apr 2012
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Originally Posted by dscvr View Post
I was diagnosed a couple of years ago and continued to work full time. Next week i'll be working part-time to take care of this...there has to be another way to treat this besides mexiletine. I just don't feel comfortable taking it with the side effects and such since there wasn't a dramatic difference. Trying to do research on the net for this is like running in circles. I want to find a doctor that is willing to experiment...what do you have to lose when your in pain every second of the day, right? I'm tired of reading that this is not a painful disease when that is absolutely 100 % false.
or that as you get older it gets better...lol ya right. i feel your pain and i also would be willing to be some ones test subject. im beyond frustration with this. and i would do anything to make it a litle bit better for my kids
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muscles freeze up, muscles lock up, myotonia, myotonia congenita

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