Muscular Dystrophies Support Group

The muscular dystrophies are a group of genetic and hereditary muscle diseases; characterized by progressive skeletal muscle weakness, defects in muscle proteins, and the death of muscle cells and tissue. In some forms of muscular dystrophy, cardiac and smooth muscles are affected. The muscular dystrophies are the most-known hereditary diseases... There is no known cure...

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Genetic & Metabolic
/ Muscular Dystrophies Support Group

myotonic dystrophy type 2

Monnie45
Monnie45
Hi, I was just diagnosed with myotonic dystrophy type 2. I am not having any significant symptoms now. I do have some difficulty climbing stairs but that seems to be all. I am scared though, what is ahead. I was told I need to see a cardiologist and tell my kids and they should get tested.
deleted_user
deleted_user
Hi, Monnie45

I also have myotonic dystrophy type 2. There is a group on Yahoo that has 123 members (pretty good considering the number of confirmed cases is somewhere in the hundreds). We are not trained medical professionals, just a group of people who, like you, have many questions about DM2. First of all, if your kids haven't been tested, DON'T DO IT! If they are diagnosed, it will be extremely difficult for them to obtain medical insurance. While a definitive diagnosis is nice to have, just to know, there are no treatments yet for the disease, only for the symptoms.

You should see a cardiologist. You need to get a echocardiogram to get a baseline level, and have annual EKG's. You also need to have a fasting glucose tolerance test, even if your glucose levels are all normal. Cardiac problems and diabetes both can be ramifications of DM2. Also, if you need surgery and general anesthesia, make sure the anesthesiologist knows you have it.

It all sounds pretty scary, but DM2 is much milder than type 1 and needn't curtail your activities. Keep as physically active as you can, stay healthy, and be positive. I also have problems on stairs, but when I feel sorry for myself I remember my friend in a wheelchair who is always smiling and can't climb stair at all.

Feel free to write to me if you have any other questions, and check out the group on yahoo. Good luck!

- Ellen
deleted_user
deleted_user
i had a high CPK.. and doing alot of reading..my hands are killing me.. me feet too...and i am soooo weak i can barely do anything..i had cataracts this year they were swift and severe.. this typ MD is linked to cataratcts isnt it?? also my mother was dx with fibromyalgia.. got disability it was so bad.. but many are mis dx with that arent they?? and this is the most common type.. so why only 100 conformed cases?? im confused.. my insurance runs out in 10 days and i have not got a definative answer.. once its suspected it should be to long to do a gene test should it?
Monnie45
Monnie45
Hi, just because your CPK is high, doesn't necessarily mean you have MD. Were you told by the doctor that it was a suspicion. I am not an expert but my thought is you wouldn't want to get a positive test until you have new insurance. I would love to hear from you. Looks like you are significantly younger than I am. I am 64 years old and luckily my symptoms do not really interfere with my life activities yet. I hope they are slow developing. I am still working but am not enjoying it, I cannot wait until the day ends starting at 8 in the morning. Do you work? Where do you live. I live in Silver Spring, MD. You can contact me at Chaver123@aol.com. I would prefer that.

Marlene