Hi Eric - I never knew what it was until I was 54. I spent my life making excuses and covering up, because I was so mortified by my "clumsiness" (though I knew, deep inside, that that was NOT what it was). Anyway, I was SO thrilled to finally be vindicated by a true diagnosis that I tell everyone and anyone, if the situation warrants. For instance, when I started a new basic dog obedience class with our newest Doberman puppy, I told the instructor that I have MC, briefly explained it, so that she would know that if I stumbled or something, to basically ignore it, and not worry. I have found it very free-ing! lois

Type of Myotonia: Myotonia Congenita, Becker's type

Country: USA

My son is 11 years old and we live in Los Angeles County and he has MC. Always searching to help him without all the meds.

I grew up not knowing what I had, because - well - it was the 1950's and basically everyone figured if it didn't come with spots like measles or paralysis like polio, it wasn't important. I compensated in my own ways (and upon being diagnosed and finding this forum, I learned that many of us learned, independently, to compensate in the very same ways) - and grew up basically normal. I chose the activities that I could do reasonably well without putting myself in too much danger (I ALWAYS wanted to ski, but knew in my gut that it wouldn't be a good idea for me - the primary reason being getting on and off the lifts!).
I have never taken any meds for this, and have no interest in doing so. I will be 60 next month, and have been active, and worked as an RN, and danced and gardened and was an avid walker for many years.
If your son is happy and healthy, his best medicine will be brains, a strong sense of self and a great sense of humor! Lois

Type of Myotonia: MC- Becker's type

Country: USA