Re: Questions for Dermatomyositis Patients??
Theonlykimi, I will try to answer some of your questions. I do not have DM but my husband does and I went down the whole path with him. He says that sleep does not help the weakness, pain, or spasms of his muscles only the medication does. His weakness became very severe, to the point where he could not lift his arms, legs, and eventually could not hold his head up very well and finally his throat became weak and he could not swallow without choking.
Now all that said, and I didn't say it to alarm you, on to the second question. He is one of the over 50yr. old patients who had cancer and got the DM from the cancer. Of course his symptoms were thought to be from the chemotherapy which was getting rid of the cancer but destroying his immune system to do it. Therefore his weakness went beyond what it normally would because it was thought to be from the intense chemo that was doing it's job and getting rid of the cancer. In older adults DM is associated with a malignancy. The most technical explanation I could get was the cancer cells do something to the immune cells as they try to fight the cancer cells and somehow the immune cells mutate into the DM. I'm sure that helps you about as much as it does me!!!
Does the EMG hurt.....he says not much, it was just like a little twitch or a sting. He was in a very weak condition when they did this test and I was right there, and it didn't appear to be bothering him very much.
The muscle biopsy, you will be put under for that. That was a surgery, for my husband a surgeon made a small incision in his shoulder and took out a piece of muscle. They keep it stretched out and send it to a lab for analysis. We have the leading muscle guy here in St.Louis. He is suppose to be famous for his muscle diagnosis world wide, but he takes forever. It is one day surgery and not a big deal.
To reassure you, my husband is doing very well now. He continues on a medication called Methotrexate and he sometimes uses a celebrex when he is extra sore. He takes all the precautions with his skin care, sunscreen, lotions for his face and of course a hat. He does have the skin discoloration on his hands still and a red face most of the time from shaving but otherwise he is doing great.
Hope this helps
Last edited by Glojer; 06-28-2008 at 08:10 PM.