warpig
02-09-2005, 12:31 AM
Hello, I am a 35 yrs old female who recently was diagnosed at having Myotonia and myopathy. I was wondering if anyone knew the difference between myotonia vs myotonic muscular dystrophy? I have problems with weakness in both arms, muscle spasms while writing, extremely painful cramps in legs; mostly in calves and feet. The neurologist asked me about my arms and legs but I tried to explain that I get muscle spasms in my back (between shoulder blades) and in my abdomen. They are scheduling me for an EMG, and a cold study. They have taken blood and checked certain bloodwork. They will not tell me the results over the phone and it has been very frustrating. This may sound weird but if I use my arms too long they feel like they are tired and they start hurting. I have to stop what I am doing and wait for the feeling to go away. Any help or suggestions with any of this would be a great help.
I have found over the years we have to be proactive to keep ourselves from going insane.
I have found over the years we have to be proactive to keep ourselves from going insane.
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rweaver70
10-27-2005, 02:13 AM
My husband has myotonic muscular dystrophy he experiences the same things you are describing. His arms have gotten so weak he can't pick up anything heavy. But one thing we've learned if you don't do enough activity with your arms and legs they will get weaker faster and start to draw up. I massage my husbands legs alot and stretch him out and that seems to help.
God Bless.
God Bless.
CMale0624
10-28-2005, 10:57 PM
Hi, I'm a 56 year old with Myotonic Muscular Dystrophy. My fathrer had it and I inherited it from him. I was diagnosed with it in 1992 and finally had to stop working in 1996. I went on Social Security disability while my wife went back to work. I was a shipping manager in a large warehouse and was constantly on my feet all day. After a while it got to be pretty hard for me to walk plus I was stumbling over my own two feet and I caught myself falling many a time. I agree with rweaver70 about trying to keep as actuve as possible for it does seem to get worse faster if you don't. I was even told that I should try to use light weights to keep my muscles as active as possible. This diease is very hard to describe outsdie of the basic symtoms, I know people who have it that started showing problems when they were younger then me and now, they are completely bedridden. Don't know what I'll do when I get to that fork in the road.