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.
Hi everyone ...
I was diagnosed with dermatomyositis AND lupus about a year ago. One month ago, I was also diagnosed with pernicious anemia.
I am at my wits end. My local rheumy is very nice but I've been on prednisone for ONE YEAR and it has done absolutely nothing for me, as far as symptoms are concerned. I feel I'm getting worse (more weakness, hot red knuckles, elbows (with sores breaking out now), and knees). My fatigue is just overwhelming me. I bend over to lift a laundry basket and I can't breath. My eyelids are now swelling up. I'm starting to spill protein into my urine. Blah, blah, blah.
I really like my local rheumatologist ... but my primary doctor feels it is time for a second opinion and wants me to go to a highly-trained specialist, who sees these diseases (especially the dermatomyositis) more often. She was honest that she didn't really know WHO to send me to.
I live near Boston but I am willing to travel anywhere on the East Coast to see someone who truly might be able to help me.
Does anyone have any doctors they recommend? Any to avoid?? ANY input would be appreciated!
I hope all are having a good, pain-free day ... and thanks so much!
I was diagnosed with dermatomyositis AND lupus about a year ago. One month ago, I was also diagnosed with pernicious anemia.
I am at my wits end. My local rheumy is very nice but I've been on prednisone for ONE YEAR and it has done absolutely nothing for me, as far as symptoms are concerned. I feel I'm getting worse (more weakness, hot red knuckles, elbows (with sores breaking out now), and knees). My fatigue is just overwhelming me. I bend over to lift a laundry basket and I can't breath. My eyelids are now swelling up. I'm starting to spill protein into my urine. Blah, blah, blah.
I really like my local rheumatologist ... but my primary doctor feels it is time for a second opinion and wants me to go to a highly-trained specialist, who sees these diseases (especially the dermatomyositis) more often. She was honest that she didn't really know WHO to send me to.
I live near Boston but I am willing to travel anywhere on the East Coast to see someone who truly might be able to help me.
Does anyone have any doctors they recommend? Any to avoid?? ANY input would be appreciated!
I hope all are having a good, pain-free day ... and thanks so much!
Mayo Clinic is also highly recommended too. You could also talk to people at The Myositis Association www.myositis.org for a good place closer to you for treatment.
I know several people on this site may live on the East Coast and may have some good recommendations too.
Best of luck to you.
shawna