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kimcvi (@kimcvi)

Myotonia Congenita

Neuropathy | Last Active: Nov 1 7:19am | Replies (149)

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@kimcvi

Thank you for your reply, this is a rare disease and I am working with the Mayo Clinic to try to find out which of the MC that I have as exercise and over work makes my muscles worse. I have no doctors where I live that can help or understand what I am going through, My neurologist at the Mayo is very helpful (as much as he can) and I see them once a year. I just have no one that understands my condition.

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Replies to "Thank you for your reply, this is a rare disease and I am working with the..."

@kimcvi I had never heard of this before you started this discussion. I am curious, what kind of pain do you experience with MC? It sounds like the muscles become stiff because they don't naturally relax. Do you have pain similar to what most people have with a charley horse, or maybe due to MC you have never experienced a charley horse? A website I was reading said some people experience mild symptoms. Is your particular case a more severe one? Hope you find answers here. Best Hank

I too have Myotonia Congenita, I was diagnosed at age 26, it manifested with pregnancy, im now 57, I have a Doctor here in Libertyville Illinois that is a specialist of MC but I am the only patient she has ever treated with it.