Polymyositis & Dermatomyositis Support Group
Polymyositis (PM) is a type of chronic inflammation of the muscles (inflammatory myopathy) related to dermatomyositis and inclusion body myositis. The inflammation is predominantly of the endomysium in polymyositis, whereas dermatomyositis is characterized by primarily perimysial inflammation.
Melwally
Hello everyone, I have that appointment with my NP at the rheumatology clinic I used to go to. I just want to be really prepared, since this has been such a nightmare trying to find good health care providers. Can any of you list the tests you feel I need to ask for and any other questions you think might be good to ask? I have written several down myself. When this all started, my symptoms that kind of stuff. I also pulled my labs up online. It looks like I had an AST which was only 14 & an AST that was 11 both still in the normal range. My adolase test came back today and it was 5.2. I read that you are supposed to do that with no food in your stomach for about 8 hrs. No one told me that and I had just eaten lunch. Don't know if that matters, but thought I would ask some of you. So right now I'm only looking at a slightly elevated cpk. even though I have horrible muscle, joint pain, gottron's and got up with another weird rash on my arm today. My face has also been bright red all eve. Just when I am convinced that it is DM I look at my test results and wonder...
While looking at my test results I did notice a few other tests that bothered me a little. I'm no dr. My RDW was high, my wbc seems closer to the high side than I think I would like. My Carbon Dioxide SerPl QN was high. My BUN SerPl QN was high. My Glucose SerPl QN was 116. My Rbc was also a little closer to the high side then I would like. My total protein SerPl QN was low. My GP has never said anything to me about any of this. Most of these were taken in August When I was in the hospital.
Also how often do your doc's usually repeat labs? Please anything anyone can offer. Don't forget about my lungs. I think someone said it was a JO-1 test I needed... You have no idea how much I appreciate all of you. This group has been a God Send.... Truly :)
While looking at my test results I did notice a few other tests that bothered me a little. I'm no dr. My RDW was high, my wbc seems closer to the high side than I think I would like. My Carbon Dioxide SerPl QN was high. My BUN SerPl QN was high. My Glucose SerPl QN was 116. My Rbc was also a little closer to the high side then I would like. My total protein SerPl QN was low. My GP has never said anything to me about any of this. Most of these were taken in August When I was in the hospital.
Also how often do your doc's usually repeat labs? Please anything anyone can offer. Don't forget about my lungs. I think someone said it was a JO-1 test I needed... You have no idea how much I appreciate all of you. This group has been a God Send.... Truly :)
deleted_user
I have been seeing a Rheumatologist for Dermatomyositis since April this year. She started me on Prednisone aggressively. Now I have been weaned down to 10 mg daily. I am now in remission. I have had all the CT scans no malignancies. My labs were crazy-now normal. She is seeing me every 3 months to eval my lab work. hopefully we can maintain. I hate taking the prednisone. Moon face, large andyuckbut, better than the alternative. My Dr. was very knowledgable in Dermatomyositis. She brought in another Dr to see me also. b/c it is a rare disorder. It takes time so try to be patient. I am so glad I found this support group just reading the post have helped me tremendously. This is my first reply. I wish you well. Praying for peace and comfort.
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