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.
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.
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.