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.