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Old 06-27-2008, 04:37 PM   #1
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Questions for Dermatomyositis Patients??

Hi I am 21 years old and trying to figure out what is wrong with me, I am currently being tested for dermatomyositis and have a few questions for those of you who have already been through this.

Does your muscle pain, weekness and spazims ever improve or go away after enough sleep and rest?
Are any of you with DM between the typical ages for this disease -over 18 and under 50?
Does the EMG or the muscle biopsy hurt? What are they like?

Please help me!
Thank you.

 
Old 06-28-2008, 08:06 PM   #2
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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
Glojer

Last edited by Glojer; 06-28-2008 at 08:10 PM.

 
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Old 07-01-2008, 07:24 AM   #3
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Re: Questions for Dermatomyositis Patients??

Does anyone else see a neurologist? or does everyone just see a rhuematologist? my regular doc is sending me to both specialists and i'm not sure why.

 
Old 07-01-2008, 06:19 PM   #4
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Re: Questions for Dermatomyositis Patients??

theonlykimi, my hubby sees a rheumatologist only for his DM. He did have his EMG done by a Neurologist though.

Glojer

 
Old 07-14-2008, 12:37 AM   #5
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Re: Questions for Dermatomyositis Patients??

Hi the onlykimmy...I am 31 now but was 23 when I was diagnosed with Dermato. I had a muscle biopsy ..didn't hurt I was asleep (you can ask to be). EMG is not painful just uncomfortable.

My symptoms...muscle weakness in arms and legs could not walk or lift my hands over my head. A weird rash all over my body. Severe mind bending stomach pain (had ulcers from the auto immunity) and fatigue.

I was on predisone and methotrexate for 1 year and now I am fine...as if it never happened, even had two more babies since.

Good luck and hang in there.

 
Old 07-14-2008, 11:12 AM   #6
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Re: Questions for Dermatomyositis Patients??

thanks for the responses everyone! one more question has popped up: has anyone gotten any of those calcium deposits? i have a bump on my toe and i am trying to figure out if thats what it is or just something else?
thanks everyone for your support and answers to all of my questions.

 
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