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.
Good Afternoon Everyone-
I am looking for a doctor that has some knowledge of Dermatomyositis in the Orlando, Fl area. I have been having a lot of symptoms and believe I have dermatomyositis but I can't find a doctor that has any knowledge or really wants to investigate things further. I was in the hospital last night for what they thought was a blood clot but was what they diagnosis as rhabdomyolysis- from a CK test. My levels were about 600+ I believe the norm high is 200. It wasn't high enough for them to have concern about my kidneys so they sent me home, told me not to work out for 2 weeks, but offered no other guidance. I have been suspecting dermatomyositis for years but never had this part to prove- I have strong butterfly rash, similar looking rash on my chest, and the back of my arms- have never had any type of relief from it. Every 1-2 years I have a flare where my entire body breaks into hives for no reason, one time I had a doctor write an A with a pin to show the other teaching doctor that 'I wasn't lying' showing him the reaction I guess. Normally when I bring up this concern with a new doctor they just run the autoimmune panels- which report back normal- and they send to a dermatologist- but I've tried all the creams, lasers, you name it, I've tried it and nothing helps. The joint pain comes and goes, but is mostly tolerable. I just want a doctor to take me seriously and look into this verses telling me its vein and I need to get over the fact I have red skin.
I am looking for a doctor that has some knowledge of Dermatomyositis in the Orlando, Fl area. I have been having a lot of symptoms and believe I have dermatomyositis but I can't find a doctor that has any knowledge or really wants to investigate things further. I was in the hospital last night for what they thought was a blood clot but was what they diagnosis as rhabdomyolysis- from a CK test. My levels were about 600+ I believe the norm high is 200. It wasn't high enough for them to have concern about my kidneys so they sent me home, told me not to work out for 2 weeks, but offered no other guidance. I have been suspecting dermatomyositis for years but never had this part to prove- I have strong butterfly rash, similar looking rash on my chest, and the back of my arms- have never had any type of relief from it. Every 1-2 years I have a flare where my entire body breaks into hives for no reason, one time I had a doctor write an A with a pin to show the other teaching doctor that 'I wasn't lying' showing him the reaction I guess. Normally when I bring up this concern with a new doctor they just run the autoimmune panels- which report back normal- and they send to a dermatologist- but I've tried all the creams, lasers, you name it, I've tried it and nothing helps. The joint pain comes and goes, but is mostly tolerable. I just want a doctor to take me seriously and look into this verses telling me its vein and I need to get over the fact I have red skin.
In the meantime, keep a log of all your symptoms and take pictures of any rashes you experience, along with the dates they appeared. While keeping that log, you might also want to keep a food log, to see if there are any foods that seem to trigger worsening symptoms. I'm no doctor, but was wondering if you were ever checked for Lupus, as many of the symptoms are similar to DM. When you find a doctor, have him/her check for lupus as well. Be sure to read some of the older posts to gain information. Make a list of questions for your doctor also. You've got to advocate for yourself. Best wishes.
Here is another site you might find helpful: www.Sclero.Org
DM does not just go away. It is a frustrating waiting game for some patients to get a diagnosis. Autoantibodies, or anti-nuclear antibodies, high CPK, EMG testing, muscle biopsy, physical & skin symptoms are several things that are considered for diagnosis.
Do visit the Myositis Association for more information too.
Keep us posted. Best Wishes.