I have lived with Myotonia Congenita all my life and have learned to live with this annoying and sometimes painful disorder. I was diagnosed around 1990. I'm am starting to have a little more pain and more stiffness as i am getting older, now at 50. I am hoping to meet others to share and just talk. If you have MC and live in Denver, Co or anyone wanting to talk to me please contact me via e-mail. Hope to hear from others soon..

Type of Myotonia: Myotonia Congenita

Country: Usa

Daniel,

I live in Colorado Springs. I have never met anyone else in the area with MC but I know there are several that attend the MDA clinic at the university. I can ask the patient coordinator if we can send out an invitation for a get-together in the spring.

Jan

Type of Myotonia: Thomsen's

Country: USA

Hi Jan, thanks for the quick reply. I look forward to hearing back, I would very much like to meet others with MC. What are your symptoms, do you have the stiffness like me, face, legs, arms, sometimes swallowing, stiff eyes, tongue - speaking. I went to see a neurologist today and had a good visit. He started me on new med Mexiletine. I sure hope this helps with the stiffness and pain.

Type of Myotonia: Myotonia Congenita

Country: Usa

Daniel, I used to have very severe stiffness. I can control it to a large degree with diet, but it doesn't seem to work for everyone.

Mexitil is by far the most effective medication for the greatest number of people. Hopefully you'll see some positive results. You do need to monitor liver enzymes and get and EKG every 6 months or so. If you develop any heart arrhythmias you need to stop and see your doctor.

Do you have other family members with myotonia? Usually the stiffness affecting eyes, tongue, swallowing, etc. is the dominant form or Thomsen's.

Jan

Type of Myotonia: Thomsen's

Country: USA

A lot of the change has to do with your activity level, NOT age. Activity level drops, myotonia increases, you think it's age, you drop activity level more...

My grandmother quit her job because her diagnosed myotonia got so bad when she was in her 50s because she was told to rest to make it better. Since learning about myotonia, my mother has "cured" most of what she thought was arthritis (she's in her 50s now) by working or massaging muscles selectively. Chronic spasms can cause joint dysfunction which acts much like arthritis.

I'm terrified of having reduced mobility when I age! As long as I can work my muscles, the pain will be okay.

Type of Myotonia: Thomsen's

Country: USA