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.
I actually posted in November and haven't been back on since. I just wanted to thank those of you for welcoming me then and hope you can offer some feedback to my most recent post. Everyone on this site seem to be so helpful and encouraging. That means so much!! Especially when you have struggled with doctor's who are not.. Thought I finally had a diagnoses to put with my symptoms, but after seeing my new Rheumy today and her input on my labs, now I'm not so sure... I do feel better hearing some of you say it took the Prednisone awhile to work. My dermatologist concurred and I felt the same. I think I need to find a new Rheumatologist. She acted like it should have worked instantly. I have to say I am a bit perplexed about my labs as well. If anyone knows of anything other than cpk, sed rate & ana that I should have checked please let me know. I have had a number of other tests, which have all been normal but those are the ones they have focused on. I am waiting on an adolase test I had today. Any input at this point will be helpful.
DM is not something that just goes away. Over time a doctor would not be able to deny DM symptoms. Lung problems especially Anti-Jo1 autoantibody are a strong DM issue. Keep in mind there are other autoimmune diseases that have similarities to DM. Doctors do go by blood work and autoantibody tests. I think it is important to have confidence in the doctors. You need good communication and the assurance that the tests do confirm the diagnosis.
I am praying that you will receive an accurate diagnosis. Welcome to the group!
Thanks so much for the info. The Derm that diagnosed me did so because of all my symptoms. I have the Gottron's Papules, very red hands. Rashes that come and go over the last couples of years, hard nodules in my elbows. Severe muscle, joint pain and weakening. I have looked at the pics and my hands look very similar. Hemmorhaging nail beds. I have the dark circles under my eyes, hand tremors, my voice has deepened over the last year. The 'list goes on and on. After the muscle & joint pain started getting worse is when I started having problems feeling like I couldn't get a full deep breath. My Gp sent me for a chest x-ray and said I had a mild case of copd. I said well there has to be a connection with all my other symptoms and he said no, it was probably from chemicals because I owned a cleaning business. I disagreed, although it is not good to inhale chemicals I protect myself. I told him I had never smoked in my life and didn't he find it odd that I would all of a sudden have all these symptoms. He knew I was a trainer and worked out 5 or 6 days a week but still blew me off. I have been to so several doc's and until this derm have basically been blown off or we don't know or it's Fibro. Fibro doesn't explain my skin conditions or my lungs. Ugh!!!!!! I am so frustrated. I have some apts. coming up with some of the docs I have seen before that were I open to diff tests they just couldn't figure out what was wrong with me. I think because I have joint pain they focused on RA but then my x-rays would show no joint damage so then they would focus on thinking I'm a hypochondriac or say it was anxiety. I have never had the Anti-Jo1 test and they just now tested my adolase levels yesterday. Because my sed rate and ana were negative everyone so far except this Derm has said it is nothing autoimmune. My grandmother had Scleroderma and Raynaud's and this Derm I saw said he def believed there was a hereditary factor. I am going to keep trying to find competent doc's and learn everything I can. I really appreciate your feedback. I will keep you posted.