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! I am very excited to find this support group online. I have a complex medical history and have been under the care of multiple physicians for autoimmune issues. I was without a specific diagnosis for the last 10 years.
Initially, I was diagnosed with MS but that was revoked a year later. I was recently diagnosed with Mixed Connective Tissue Disease.
I was sent to Stanford Dermatology Clinic for a rash on my shins last September. The dermatologist was much more interested in my facial rash and extreme sun sensitivity than my shin rash/
I had a skin biopsy done and it came back positive for Lupus or DM. I was then referred to the Dr. Fiorentino's DM Clinic. He was fairly certain that I have DM. I underwent a second biopsy with immunofluorescence and it was positive for Lupus. I know multiple autoimmune diseases can coexist.
Stanford sent a bunch of my blood, as part of a research study, to John Hopkins and the Mayo. I have not heard if the results are back. I will have another appointment there at the end of the month with Derm and Rheumatology at the same time.
Yesterday, I saw my primary rheumatologist and he did not discuss DM directly. Instead, he told me I would have to see what the doctors at Stanford tell me. Once I got home, I downloaded the after visit summary and it stated that my diagnosis is Dermatomyositis, Needless to say, I am confused whether I have DM or not. He is able to access the Stanford notes and test results.
My diagnosis is complicated by the fact that I have been on IVIG for the last 4 years. All my antibody testing has been fairly normal except for anti thyroid peroxidase antibodies. All my CK levels are normal, along with normal ANA. I had anaphylaxis to IVIG 2 months ago and have not had it since. My body is struggling without it.
Sorry this is so long but I just wanted to introduce myself. I hope it is okay that I am posting here without an absolute diagnosis but I feel very alone. I had not even heard of DM until last September. Thanks!
Initially, I was diagnosed with MS but that was revoked a year later. I was recently diagnosed with Mixed Connective Tissue Disease.
I was sent to Stanford Dermatology Clinic for a rash on my shins last September. The dermatologist was much more interested in my facial rash and extreme sun sensitivity than my shin rash/
I had a skin biopsy done and it came back positive for Lupus or DM. I was then referred to the Dr. Fiorentino's DM Clinic. He was fairly certain that I have DM. I underwent a second biopsy with immunofluorescence and it was positive for Lupus. I know multiple autoimmune diseases can coexist.
Stanford sent a bunch of my blood, as part of a research study, to John Hopkins and the Mayo. I have not heard if the results are back. I will have another appointment there at the end of the month with Derm and Rheumatology at the same time.
Yesterday, I saw my primary rheumatologist and he did not discuss DM directly. Instead, he told me I would have to see what the doctors at Stanford tell me. Once I got home, I downloaded the after visit summary and it stated that my diagnosis is Dermatomyositis, Needless to say, I am confused whether I have DM or not. He is able to access the Stanford notes and test results.
My diagnosis is complicated by the fact that I have been on IVIG for the last 4 years. All my antibody testing has been fairly normal except for anti thyroid peroxidase antibodies. All my CK levels are normal, along with normal ANA. I had anaphylaxis to IVIG 2 months ago and have not had it since. My body is struggling without it.
Sorry this is so long but I just wanted to introduce myself. I hope it is okay that I am posting here without an absolute diagnosis but I feel very alone. I had not even heard of DM until last September. Thanks!
As I recall, it was Dr. Fiorentino who said I was the most complicated patient they had ever seen.
I received a phone message regarding my most recent skin biopsy. They said it was very interesting and consistent with early Morphea or systemic sclerosis but not a slam dunk diagnosis. I looked up systemic sclerosis and it is just another name for scleroderma.
I am really confused as I have skin biopsies that are positive for Lupus, DM and now, scleroderma. I have no idea what this means in the big scheme of things and whether I have any of these conditions.
All my autoimmune blood tests looked pretty normal. The only antibody test that is positive is the thyroid antibodies (anti TPO) but my thyroid function is still normal.
I saw the Stanford Allergist and he was agreeable to restarting the IVIG. His team is working on getting it reapproved, by my insurance and figuring out how to give it to me safely. I will have to do it at Stanford and he said, most likely in the ICU. At this point, I do not know what brand he will use.
I really miss my infusion center. I have been going there for 4 years and it is so close to my house. I still see them every month for labs and a Medi-port flush. It will be hard to get used to new nursing staff but I don't have much choice.
I did see that there was a Myositis Support Group meeting coming up. I was thinking of going but it may be presumptive of me. Will you be attending?
Thanks for your support.