I have the dominant form of MC. I am 44 and my symptoms are mild. My father (74) has always had more troublesome symptoms. But now, even with medication, in addition to the usual arm and leg stiffness, he has progressively gotten more severe swallowing problems. He chokes constantly on food. His speech is also getting very hard to understand. He slurs words. He sees a specialist who isn't sure if the choking and speech problems are due to MC. What do you think?

Is it possible for symptoms to get progressively worse with age? Is this what I have to look forward to as well?

I have a 3 year old daughter. At what age would symptoms appear if she inherited this from me? At what age would she be out of the woods?

Nic,

Symptoms don't usually progress, however some medications that tend to be prescribed as we age can make the myotonia worse.

I would be more suspicious that he is having reactions to some blood pressure or cholesterol medicine and that could be aggravating the tendency toward swallowing problems. Also if he's using insulin for diabetes that could cause the myotonia to get worse.

With Thomsen's MC the symptoms may not show up till around puberty. Becker's seems to be evident at a much earlier age. I think we noticed significant stiffness in my two daughters around the age of 9 or 10. If she has not symptoms by the time she's a teenager, she probably didn't inherit MC.

If you live in the US you can always get an EMG done on your daughter at any MDA clinic (no charge if you don't have insurance). It just takes a few minutes and that would be definitive without going through the DNA testing. Their website is www.mdausa.org

Jan

Myotonic dystrophy is extremely hard to determine. In some there will never be symptoms worse than slight stiffness, in others the symptoms may get worse with age. Thus, it is impossible to tell how much worse your illness may get. It might not get any worse, or it might. For example, my father passed the test to get into Special Forces during the Vietnam War and was an All American swimmer headed for the olympics. After his diagnosis in his forties, his disease got worse and worse until he retired early on disability, and now he has problems in all areas of his life (this includes choking and slurring words which, in his case, is do to MD). Other members of his family barely suffered at all, and his sister is only tired much of the time, with gaunt features and cataracts. Where your daughter is concerned, it is impossible to tell when symptoms might show. Some people show symptoms from birth, some not until they are in their forties. Fortunately, when passed throught the paternal line, it is likely not to get worse, as it does when it is passed maternally. The only sure fire way she would be "out of the woods" completely is if she tested negative for the disease. Otherwise it could develop at any point in her life. As a child of a person with mytonic dystrophy, I haven't gotten tested yet in my late 20s as it hasn't caused me any difficulty, but I will do before I have children of my own. At three I wouldn't worrry about it, but you should keep an eye on her, as some people can have learning disabilities associated with the dystrophy. Unless she starts showing symptoms that can be treated, I see no reason to get her tested yet, but that is up to you. As far as I was concerned, I had no need to know, put it on my health insurance, or deal with it until necessary. KAte

Some of the things that you have described in your letter, seem to be from some other illness. I have never heard of someone who was not born with PMC. The doctors told me that this is an inhereited disease That it would get better with age, which it has. Since i can remember, i was always falling down, dropping things and unable to open my hand at times, muscles cramping up after swimming. I have difficulty in swallowing too, but not to the extent of choking. I have learned to deal with this all my life, hiding it from everyone. but as far as what i know, the disease will not cause muscles wasting or further disability from what you always had growing up. If your father was able to do all those things at a young age, and only now shows signs of slurring and choking, there is somethings else wrong. Rhonda