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Waiting

Hello everyone , hope all is well.. I am waiting for an appt with a specialist for DNA to find out which type of myotonia I have. Because of an injury I had an EMG done and was told I had myotonia. My question is while I am waiting to find out is there a way to know if it is myotonia congenita , or myotonia dystrophy by symptoms ? I am 45 and as far back as I can remember all I had was the locking of the hands at times and sometimes stiffness when getting out of a chair and stiffness in cold weather.. Thanks for any advice while I wait.

Gia

Type of Myotonia: Not sure

Country: USA

Re: Waiting

If you have more stiffness than weakness, and you don't have cataracts or other significant health problems, then that probably means you don't have a myotonic muscular dystrophy.

Do you notice diet affecting your symptoms?

Type of Myotonia: Becker

Country: USA

Re: Waiting

Hi Jenna and thank you for the reply back to me. I dont notice any stiffness with certain foods but I do notice it more if I go all day without eating.

Type of Myotonia: Not sure

Country: USA

Re: Waiting

The waiting is the hard part but it will be nice when you finally know the type of myotonia. It takes about six months to get in to a neurologist here and then they often refer you to a geneticist for the testing (another wait) and then you have to wait for the test results which can be several weeks.

Many of us weren't diagnosed until we were adults...it's not uncommon for doctors to dismiss the symptoms. I agree with Jenna, it's very unlikely that you would have myotonic dystrophy if you haven't seen other symptoms by now.

Keep us posted!

Jan

Type of Myotonia: Thomsen's

Country: USA

Re: Waiting

Thank You Jan for the help :)

Type of Myotonia: Not sure

Country: USA