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.
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 :)
The Dermatologist that diagnosed me with DM did so by my elevated CPK. and my skin issues along with all my other symptoms. Although my CPK is not drastically elevated, he is an older guy and said he has seen it enough and everything I have fits perfectly. To be honest I had never heard of it. I have spent the last 2yrs ill with my condition getting worse so I was just glad to have a name to put with it. After researching what I have, I do have all the classic signs and symptoms, but my labs so far come out neg all but the cpk. I will ask her for these tests today. Thanks!!!
Yes, thanks. I have that test written down. I had a pulmonary function test done in august, along with a CT with contrast. The pulmonologist pretty much just said mild copd. He acted like it was really no big deal. Told me to use an albuterol inhaler. I asked him why I would have this since I have never smoked and exercised regularly and it followed my muscle & joint pain. He really never answered me and put on my diagnoses major anxiety disorder. When I left I thought wow thanks, I don't ever feel like I get a deep breath and get out of breath very easily but it's anxiety. My CT says subsegmental atelectasis at posterior bases of lungs.
I wouldn't think you need lots more tests if you have already been diagnosed. But it really is up to you and your doctor.
Tricia
If there is an improvement in the pulmonary function in the seconed time the problem is asthma.
I am doing this pulmonary function test for the last 6 years..In my CT scan it also says subsegmental atelectasis at posterior bases of lungs. ".
I think your doctor should communicate more with you, so that you will have confidence with where you stand. I would ask the doctor what he thinks might be developing with your scores.
Ask questions and do not worry. Keep us posted!
http://www.myositis.org/learn-about-myositis/diagnosis/blood-tests
http://www.myositis.org/learn-about-myositis/diagnosis/antibody-testing
Initially I was tested for Parvovirus 19, and later for IgG and IgM. Also, my doctors seem to run the WBC each time. Has you doctor done the EMG & Nerve Conduction Test? Here is a link for a Physician's Guide to some tests.
http://www.arupconsult.com/Topics/InflammatoryMyopathies.html
Gottrons if diagnosed by a dermatologist is also a confirming condition... I have those, and skin biopsies all positive. No muscle biopsy needed...