Hi Im 13 and i'm from sweden and I just got to know that I have this M.C it has been very hard for me in school cause I've been teesed about me not running fast and i've been telling my ''friends'' what I have felt in my muscles and tried to explain it but they never belived me but now when I know what it is It feels easier to explain so in a way, it's better for me to know what I have and I have always been having truble by playing things like hockey or soccer and I always quit that cause I couldn't run and move as fast as others and it has kinda felt like one of thoose nightmares when your being chased and can't run and that's the easiest way to explain this disie to me but now I'm focussing in what I can do and that's editing movies on my computer and i'm not really thinking about my muscle disie that much so that's what i would say to you other kids/teenagers,
don't try to think about you having truble moving when your not warmed up!
We have been looking for what this is since I was about 5 years old and now we know.....
Type of Myotonia: beckers, the nicest one but don't know the name of that one
Hi Emil! It is nice to finally know what's wrong. I remember what a relief it was when I got my DNA test results.
My daughter tells everyone to watch fainting goat videos so they can understand the condition. Of course some of the YouTube videos are just plain mean but some explain the condition:
I am 12 years old. I have not been tested for myotonia, but feel the same symptoms that many describe. This disease holds me back in the sports I like to play, but my friends are very supportive and I still can. Practicing tricks and moves in my spare time help make up for being slow. I would suggest not giving up and trying for what you want to do.
You should tell your doctor you would like to see a neurologist and have an EMG done. This is a test where they listen to the signals of your muscles. If you have a disorder that causes true myotonia, and you have symptoms the day they do the EMG, then it will probably show up. From there, they can determine the exact type by doing a DNA test on a sample of your blood.
If you do have a myotonia causing disorder then it's important your doctors know because people with myotonia causing disorders like myotonia congenita, can't have certain medications that are often used for surgery or in emergencies where the person has to be intubated. One of these medications is called succinylcholine, though it has a few other names as well. Doctors need to be prepared to use an alternative in people with myotonia causing disorders.
When I was growing up with MC it was a very lonely, and occassionaly scary, time. It was not until the internet became generally available that I was able to talk to other people with the same condition.
I would encourage young people like Emil to make the most of forums like this learn as much as they can about MC, share their experiences with others, and learn to cope.
MC remains a difficult condition to deal with but there's no reason to be alone anymore. Good luck to all of you.
hey emil!
My names Paige and I'm 12, and I have becker type MC. I found out when i was 8, but my mum knew since i was little. Like you, i used to get teased for not being able to do things like running ect;. It does get better though, as you learn to live with it, and hopefully you will find that people won't tease you as much now you know you have MC.
At my school, all the teachers know about me and so do the kids, however i do always feel self-conscious when walking up stairs and getting up from chairs and the floor and things.