Hi, I was diagnosed with Myotonia accidentally when I was injured in an accident with an emg study for a nerve injury. I read articles and some say you can have a long productive life and some say you can die young from this. I am in my early 40s. I have had lock hand symptoms for many years and never knew what it was. I am very scared to have passed this to one of my children. Does anyone know the true facts of this illnesss. Thank You for any help and take care.

Type of Myotonia: Not sure

Country: America

Gia,

There are several types of myotonic disorders and an EMG can't distinguish which type you have. I always encourage people to get the DNA testing done so that you can know for sure.

If you have myotonia congenita or paramyotonia congenita, you have a normal life expectancy. But myotonic muscular dystrophy (MMD) does usually result in a shortened lifespan because it affect the heart, liver and and breathing capacity. If you have MMD you usually start developing cataracts in your 20s and gradually have muscle weakness and wasting.

Once you get your DNA results then your children can be tested for the exact mutation. If no one else in your family (including extended family like aunts, uncles, or cousins) has had symptoms, then it's likely you have the recessive form of myotonia congenita. If that is the case, then your children won't be symptomatic.

If you go to MDAUSA.org you can type in your zip code and find the neared MDA clinic. Some have funding for DNA testing, but your insurance should cover it since you have a positive EMG.

You'll learn a great deal reading through the back posts. You can search for various topics.

Jan

Type of Myotonia: Thomsen's

Country: USA

Thank You very much for the reply back to me.. it was very helpful information.

Gia

Type of Myotonia: Not sure

Country: USA