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Hello,
I know this discussion board might not be active anymore, but I was researching Myotonia Congenita at Mayo as well and came across this page. I work at Mayo and have this rare condition. My mother has it as well. I have never met anyone else that has it. If you are still active on this website, please message me to connect!
I was diagnosed when I was about 6 years old. I am 20 now. I have dealt with it my whole life growing up and playing sports. I have Thomsen's version and have tried 2 medications to help with symptoms. I just requested to get in with a neurologist at Mayo, if anyone has any recommendations please let me know! I currently use Acetazolamide with the best results, but I often get a racing heart and tingly feelings in my mouth, throat, hands, and feet. I have also noticed that caffeine and sugary drinks like coffee and soda make my stiff movements worse. As well as colder weather for some reason. When it is warm I have fewer flare-ups. When it is colder, I am often more stiff, sore, and in pain.
Emily
Replies to "Hello, I know this discussion board might not be active anymore, but I was researching Myotonia..."
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Hello Emily @emh011, Welcome to Connect. I think there may be quite a few active members in this discussion. You can see the last time a member was active by clicking on their profile icon to the left of the post. It shows when they were last active along with the number of posts they have made and when they joined Connect.
@jonesmon, @larryh123, @skeleton, @callalloo, @jcatrette, and others may be about to share their experience with you. @larryh123 share the Muscular Dystrophy Association site earlier in the discussion here that might be helpful:
--- Myotonia Congenita (Thomsen Disease and Becker Type): https://www.mda.org/disease/myotonia-congenita.
Have you done any research for support information?