Im 17y-o boy from finland. I got my myotonia when born. It seems according to many texts, that my form of myotonia is far more weaker than the "normal" myotonia is. I can exercise, do everything like normal person, but only differenece im noticing is when I'm exersicing with weights(i can't do more than once a week at gym for example). Also i feel my muscles grow very fast. My legs just pumped up just because i was working in grocery store 2 weeks!(where i just had alot of standing). same with any muscle. Im just wondering what is my type of myotonia, because i couldn't regonize it from describes.
i haven't had any problems with swallowing or anything. Only when im tired or havn't eaten/drinken in a while i can feel my illnes kicking in. I've never had to warm my self up for any fast movement ect.

it seems i've been really lucky with my myotonia. Btw, does the disease come worse after years? like when im 30 or so?

thanks for anwers!

Type of Myotonia: Not sure

Country: Finland

Tervetuloa! From what you describe it sounds like Becker's MC (the recessive form), but it is impossible to know without doing the DNA testing. You might want to ask your doctor about that so you can be certain that it is myotonia congenita and not a sodium channel myotonia.

From the feedback I get it seems like people with Thomsen's, the dominantly inherited form, have more trouble with swallowing. But people with Becker's tend to get an overall sudden stiffness and "freeze" when they are startled. They can't move any muscles to try to break a fall.

If you have myotonia congenita, then it does not usually get any worse. Some exceptions would be exposure to certain chemicals like pesticides and herbicides and certain medications like the statin drugs for cholesterol. If you have a sodium channel myotonia then it may cause a progressive weakness of the muscle.

There is a Swedish site that has a good explanation about myotonia congenita:

Socialstyrelsen - Myotonia Congenita (under the "other languages" tab you can select Finnish).

There are a few other people on the forum from Finland. If you do a search you can find their posts.

Jan

Type of Myotonia: Thomsen's

Country: USA