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Re: mytonia congenita.

Re: mytonia congenita.

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Posted by Sonny on December 07, 2000 at 23:57:51:

In Reply to: Re: mytonia congenita. posted by Peggy again :o) on October 25, 2000 at 13:14:46:

: : : 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 [email protected] send me an email.

I was diagnosed with Myotonia Congenita when I was 18 in the Marine Corps. My mother has the disease so I was not hard to diagnose. It did explain all those agonizing "growing pains" I has as a child! I have two young children 4 and 1. We believe my youngest has the disease because she used to "spit-up" much more and much longer than the ave. baby. She is a bit stumbly, too. We're not sure, she hasn't been tested yet at a med. facility. Stories my mother tells of my baby-hood seem to be similar, too. I have tried the meds the prescribe for this only to have terrile reactions (just like my mom-we have alot in common!) A while back I tried using herbal remedies and was pretty disapointed. The reason for looking for others with this disease is that I have found some herbs that seem to be very benificial. My mother and I both have 75% decrease in our symptoms! We are really excited and we know how frustrating this disease is. Being so rare, no one seems to care about research for releaf medications. e-mail me if your intersted in what we do. We will be happy to share our findings. [email protected]

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