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Scared

Hello.. Hope all is well., I have a question.
Do people with myotonia congenita feel very tired all the time ?
Please tell me of most symptoms from it. In a EMG test I have myotonic discharges in every muscle..
I only have stiffness when shaking hands or getting up from sitting..
Also if I'm very cold.. I'm concerned with DM1 or DM2.. The neurologist said it's appearing
To be a benign myotonia.. Please help.. Thank You!

Type of Myotonia: Not sure

Country: USA

Re: Scared

Lisa, I think I was born tired! When I was in high school I used to come straight home and take a nap. I still take a lot of naps.

Has your doctor ordered DNA testing for you? Many Muscular Dystrophy Association clinics will cover what is called a myotonic profile to tell you exactly which type you have. If you can't get it done in the US then there is a lab in Germany that will do it for free. You just have to pay for the blood draw and shipping. If you go to http://PeriodicParalysis.org and click on "Genetic Testing" you can see all the details.

If you are cold all the time you may have low thyroid. If your body temperature regularly runs in the 96 or 97 range, your myotonia will be much worse. When I was in my 20s, a doctor agreed to let me try a small dose of thyroid even though my tests were within normal range. It made a big difference in my stiffness. There is actually a type of myotonia associated with hypothyroidism.

It's hard not to worry when you don't have a confirmed diagnosis. A couple of neurologists thought I had DM1, also, because I had some heart problems and muscle wasting. It turned out to be a completely different disorder causing that (also hereditary).

If you haven't gone to an MDA clinic, you can find the closest one at their website http://MDAUSA.org The clinics are held once a month, usually in a large teaching hospital affiliated with a medical school. They will cover any costs that insurance doesn't pick up.

The two labs in the United States that do the testing are Athena Diagnostics and Fullerton Genetics. Let me know if I can help you with any testing information.

Jan

Type of Myotonia: Thomsen's

Country: US