Hello Rick.

We went for genetic counselling but it was for cystic fybrosis due to my wife's sister being born with it. Curiously the geneticist became fascinated with my condition and carried out some tests. I don't think that he ever got sight of my medical records though as it was still some years later when they eventually identified me with Becker's type.

Hope everything goes well for you.

Type of Myotonia: Becker's

Country: England

Hi Rick -
I wasn't diagnosed until I was 54 years old, because my parents and doctors had always told me I was faking, so I stopped talking about it! That has been a life-long challenge and frustration. However, the actual condition itself, as far as I am concerned, is more of an annoyance and embarrassment than anything, and it is something most of us learn to live with fairly easily, and to compensate for in many little ways. I have been fascinated to learn about the condition, and the sense of vindication and relief when I was diagnosed was the most amazing feeling. But I truly do believe that most of us are strong, resilient and have exceptional senses of humor because of our special challenges! Lois

Type of Myotonia: Myotonia Congenita, Becker's type

Country: USA

Thanks Jan, Pete and Lois for your feedback. We're scheduled to talk to the geneticist next month. I'll be sure and post about our experience and the results. Thanks again for having this great forum. It's nice to meet you all!
Best,
Rick

Type of Myotonia: unknown

Country: usa