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Re: mytonia congenita.
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Posted by paul
on December 05, 2000 at 23:15:42:
In Reply to: Re: mytonia congenita. posted by Peggy again :o) on October 25, 2000 at 13:14:46:
: : : My son was diagnosed with Thomsen's at about age 6. We noticed it when he kept falling chasing fly balls in baseball-not a good sport for him. He does great at soccer if he keeps running and moving. I would like to learn more about this disease. Any pointers would be appreciated.. Paul
: : : I would like to hear from anyone who has Mytonia Congenita, I have never met anyone else with this condition.
: : : I was diagnosedas a toddler, and have not seen a doctor for many years so am not on any medication. I have extremely large leg muscles which I try to hide. I find that I have to be careful when I sneeze otherwise my chest muscles seize up-very painful! I also fall a lot because I don't have the reactions to stop myself, and when I do fall people rush to help but don't understand that I need time for my muscles to 'catch up' before I can move again.
: : : Please email me if you wish to correspond further about how MC has affected your life.
: : : Kerry
: : Hi I have mytonia congenita as well. I was not diagnosed until I was over 21. The year was 1989. My mother and teachers knew there was something wrong with me but after repeated doctors visits nothing could be found. The last doctor my mother took me to said I was basicly faking my symptoms to get attetion from my twin sister!!! For many years I thought I was crazy. Why would I do something like this to myself. But I finally went to a "good" doctor he told me what I had talk about a relief! Well that is my story and I would love to correspond with people who have the same thing I do. It is very hard for people to understand when you look normal why can't you walk normal. Thanks for Listening Peggy
: My email address is firstname.lastname@example.org send me an email.
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