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Myotonic Muscular Dystrophy

Myotonic Muscular Dystrophy

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Posted by Dax Robin Fricke on December 15, 2000 at 10:36:23:

In Reply to: Re: mytonia congenita. posted by Peggy on October 25, 2000 at 13:09:29:

Peggy
I was diagnonsed in 1990 Iam from namibia its a small country above South Africa I to have not met anyone with my condition but then according to stats only one out of every 7000 to 8000 people are diagnosed with dystrophy i uesd to see doctors i even went to Europe for ayear but they all had the same thing to say though in germany they fixed a heart condition which was related to my dystophy .My heart was kind of missing a beat best way to explain this is when you do a waltz you go 1.2.3.4 1.2.3.4 well my heart was going 1.2.3. 1.2.3 if you can understand that I hope. Well I suppose I am Okay if people ask me how i am thats what i say ,does not help to say well actuaally today I,m raally feeling lousy they cant help us anyway. Well hope you get this i dont work on computers somehow i hope somebody reads this and writes back to my e-mail daxfricke@hotmail.com so long Dax

: : 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




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