Jonas,

I was diagnosed aged 10 (now approaching 50) with Beckers, no one in my family has it or knew about it hence diagnosis took years.. everyone thought I was kidding them on or it was a pyschiatric condition (apologies for spelling). I cannot get out of a chair quickly, cannot run up stairs and yep my tongue acts up sometimes... all worse when stressed (which is a pain as I am sometimes required to give presentations as part of my work - Environmental Researcher), but hey at least I have two arms and two legs...and there are a lot more people far worse off than those of us with this condition... Thing I am most grateful of is that my two daughters do not appear to have it and if it and if it does turn up in their kids at least they will know what it is and how (to some extent)cope with it...agree with Jan... carpe deim

Type of Myotonia: Beckers

Country: UK

True. Thanks :)

Type of Myotonia: Myotonia Congenita

Country: Lithuania

Hey Jonas,

My symptom severity sounds similar to yours. It's not too bad. I first noticed it as a young kid only when I was playing baseball and some other start-stop sports (sprints in gym class, etc.) Then in high school (around age 16) I started having trouble getting up stairs and noticed it much more in my day-to-day life. So I went to the doc and got diagnosed with myotonia congenita.

Since then, (I'm now 31), things have stayed the same. I don't seem to have it nearly as severe as many of the other people on the forum, feeling it mostly on stairs, when first standing up after rest (takes just a couple moments to shake it out), and then after I've been playing sports (or during stop-start sports).

I've learned from the forum that there really is a wide range of symptom severity for different people. Again, that might have to do with the type (sorry i don't know mine), and as Jan says, of course the more acute effects of that day's diet/weather/mood/etc.

Adam

Type of Myotonia: not sure

Country: USA