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Re: Changing symptoms

Hi Sam:

I have Becker MC and used to have the most trouble in my legs, though full body myotonia in my late teens. As I got older, especially after I lost weight, the myotonia began to lessen, but I started to have more problems with weakness, lack of stamina, burning, and fatigue in my upper body. I also started to develop painful cramping in my upper back. When I was in my 20's, at college, I thought it might be fun to be a professor, but I worried I didn't have the upper body stamina to stand up there and write on the board with my arms up for an hour or two.

When I drove more, my limit for being in the driver's seat was about two hours. My torso muscles would fatigue to the point of burning, and my upper back muscles would cramp and burn.

I've also developed stamina issues with my hands, and an occasional tremor which I think is due to muscle fatigue.

I feel that the potassium in coffee yogurt (over 400mg) sometimes help the burning and cramping in my back, but as you are not genetically typed yet, you should be aware that people with myotonia due to mutations on the skeletal muscle sodium channel gene, SCN4A, such as paramyotonia and potassium aggravated myotonia, often see their myotonia worsen with potassium intake. A few people on here with Thomsen and maybe Becker MC, which is due to mutations on the human skeletal muscle chloride channel gene, CLCN1, have reported that they feel potassium worsens their symptoms as well. It can be trial and error.

Recently the stamina in my torso has improved. I managed to make dinner and do dishes a while back without developing serious muscle fatigue, something I haven't been able to do since I was maybe 12. I don't know if this has anything to do with it, but I've been going to the gym and doing some core body exercises such as side plank, plank, and wheelburrow, and I've been getting more iron in my diet, in the form of dark turkey meat and very occasional iron supplementation as I was slightly anemic and iron deficient. I also reduced my caffeine intake and have been reclining a lot more, and sleeping longer, partially to rest my muscles.

I've basically just had to accept that muscles are indeed not normal, and fatigue easier, and need more down time than normal muscles.

There is also a myotonias group on facebook that is fairly active if you want more people to talk to.

Type of Myotonia: Becker

Country: USA