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 all, I was diagnosed with DM June 2012 by my dermatologist. She did a biopsy on my rash and then bloodwork. Once confirmed, she immediately referred me to a rhuematologist. I'm guessing the rhuematologists around here don't see much DM because one accused me of diagnosing myself and another laughed me out of her office. I tried to see another one but wasn't going to wait 2.5 hrs to see him. So I went back to the original rhuemy who since accusing me of self-diagnosing actually read my records sent over by the dermatologist. He confirmed the diagnosis. However, my blood work has since been only slightly abnormal. My symptoms seem to come and go but the rash has gotten much worse. The last time I saw the rhuematologist, he got angry and said he had patients in much worse condition than me and asked had I ever even talked to my primary care physician. I'm frustrated to say the least because I went back to the dermatologist and she confirmed yes I definitely have DM. I'm beginning to wonder if there is a doctor in my area that even knows anything about this. After the diagnosis I realized that I was actually experiencing alot of symptoms - I usually just ignore or put up with things because I'm too busy or don't want to deal with it. I also have a son with Alopecia which the dermatologist has treated and when she gave me my diagnosis she said that now it made sense that my son has Alopecia. She has been great but the rhuematologist have not been helpful at all. help! any advice out there?
I hope this helps. Good Luck!
While your symptoms are fairly mild, it might not feel like you need comprehensive medical care but it is in your best interest to find someone that can help you in the event it gets troublesome or more involved. The sooner you treat, the better off you end up.
I really struggled with finding a doctor to treat me. I never saw a Rheumy...always a Neurologist. We don't have any Myositis specialists but I did find a Neurologist that was willing to help me and learn about it and that has worked out perfectly given the situation. I found her by calling my insurance and had a patient advocate find me a Neurologist that specialized in muscle disease. Although she doesn't, it ruled out those only doing MS or other Neuro specialties.
While in the TMA site, look for a KIT group. These are support groups across the nation. If you have one in your area, I am positive someone can give you their provider's name. You need someone that isn't going to belittle you for being sick and is willing to help you fight this disease.
but even if you don't have any muscle complaints now, it is important to be monitored over time, so that if and when the muscles get involved you can hit it harder faster. I had DMsine myositis for nearly 8 years before the muscles came in full force, and i had no prior care other than the Derma asking are you haveing any trouble with stairs, getting up from chairs and blow drying my hair, but i did have progressively harder time with altitude and had a crisis at altitude. I had heart palpitations, and racing heart, i had choking, and vibrataing muscles with workouts and some times just at home. I had a harder and harder time bending down to pick up dirty clothes off the floor, and all those are symptoms too. Never much trouble with getting out of a chair, but now i do.
have they done all the myositis antibodies?? I have TIF-gamma and even though i was sine myositis for years, now i am particularly difficult to treat, and am on IVIG.
Keep searching, you need a doctor who can follow you over time.
My best, keep asking questions, we are here for you.
Shawna
I have a great survey study done in the late 90's of 185 patients i think with DM. Send me your email on my email and i can send it to you.
It helped me so much early on...
shawnanrn@gmail.com
You are not making this up and it could get much worse, if Plaquanil makes it better, go ahead and take that... We are here for you... it is a hard disease to have.
shawna