Hey Eric - Welcome to the forum. If you go to Jan's main website, you will see that a few of us have written our "stories", and we also have a letter that folks can print out for their doctors or anyone else, if it is useful for you. And Jan has SO much information about how diet affects MC - and very importantly, what we all need to know about the potential side effects of anesthesia. So you have a lot to look over.

I have Becker's, but I can categorically say to you that even though I lived 54 years before learning what my crazy, embarrassing disorder was, I just developed a really good sense of humor, lots of coping mechanisms, and many excuses, and have lived a full and basically normal life. I'm an RN, loved to garden, train dogs, ride bike, dance... in other words, I did lots of things. I just stayed away from dangerous stuff, because I knew that my balance and coordination were unreliable - and now I know why!

We are all pretty frank about our experiences, so don't be shy about asking questions, and don't worry - lots of us write long messages! Lois

Type of Myotonia: Myotonia Congenita, Becker's type

Country: USA

Hi Eric:

As someone with Becker MC, and not the slightest hint of family history at least back to 1772, I'm curious if there was a specific reason it wasn't talked about in your family. That kind of seems to be a common thing among families with Thomsen MC for some reason.

Maybe it is just no one in Thomsen families really recognizes it as unusual due to it's prevalence?

When I was a kid, I didn't really realize it was so unusual myself until my mother told me it was.

I remember I'd frequently get very frustrated with myself. I always felt like I was making excuses when I tried to explain why I was "dawdling" or couldn't do something, and other people treated me that way.

But if I had known I was going to have this going into life, I think I still would have wanted to be born :-)

Type of Myotonia: Becker Myotonia