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Initially, I was diagnosed with MS but that was revoked a year later.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Initially, I was diagnosed with MS but that was revoked a year later.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!
I went to Johns Hopkins in January and gave a vial of blood for their research too. They told me I won't get a result from that particular vial but I gave other vials I am pending results.
Hang in there.
You might want to read some of the older posts, because they are filled with good information. Best wishes to you, mamamakk. It seems like you are in good hands, so I hope you will receive a definitive diagnosis soon. Please keep us informed. BTW, there is also a friendly Lupus forum here on Daily Strength.
Another helpful website is www.Sclero.Org which can answer many questions on autoimmune diseases.
You are at the beginning of your journey. Welcome to the group.
I just came home from work and I am exhausted. Fatigue is a constant battle for me but I am thankful to be employed. i now have three days off to rest up.
I hope I will have some definitive answers but realize that I may not even have DM. Looking forward to getting to know all of you and learning more.
TMA the myositis association at myositis.org is a great place to find new info. Dr. Fiorentino was a board member a few years back. I drive two hours just to see him every quarter!!!
Best of luck to you.
Shawna
It was nice to hear from someone else using Stanford's wonderful Derm Clinic. I do realize how lucky I am to have Stanford in my backyard and have Dr. Fiorentino on my treatment team.
Thanks for the lead on the TMA website, I spent some time looking over it today and it has great information. The conference looks very interesting. If I do get an official diagnosis. I may try to attend in September. Have you ever gone to one of their conferences?
I really have no idea which direction my diagnosistic trail is headed so I will just go day by day. DM would explain many of my symptoms but not all, in particular, my neurological issues. I have brain stem and brain lesions. peripheral neuropathy and dropping eyelids. I have been told many times that I have this disease or that but then it can't be verified. Then, back to square one I go. The roller coaster ride is more than I can bear at times.
My appointment is coming soon and maybe they will have something definitive to tell me. I was supposed to provide study skin biopsies but I was going away on a long trip and postponed them. I suspect that they will want to do those when I return to the clinic. Where skin biopsies part of your diagnostic work-up? My biopsy results have just left me more confused. Oh, well. LOL,
Dr.Fiorentino talked about an MRI of the muscles and possible muscle biopsy. I hope I can avoid those tests. I have already had several EMG's.
I will keep you all posted. Take care.
I have my big appointment at Stanford this afternoon. I am a little nervous. Normally, I bring a friend to doctor's visits but it didn't work out today. I will have to do this one on my own.
I will post an update later today, if there is anything to update.
I have also had a bad allergic reaction, not anaphylaxis but we stopped just short of that.
I am still on IVIG, we switched brands and all has been well.
Dr. Fiorentino has a PhD in Immunology so i would trust his judgement in that...
i hope you appt went well.
Keep us posted.
Shawna
The lab work sent out to the Mayo and John Hopkins is not back yet. I had another biopsy taken from an area that gets recurrent rashes. The skin in that area has become very thickened and discolored. Dr.Fiorentino did not like the look or feel of it. The team discussed that it could be scleroderma, morphea or an handful of other things I have never heard of. I need to go to the lab for more blood work they ordered too.
I was told several times, during the appointment, that I was one of the most complicated patients that they have ever seen. Yikes! I don't think that is such a good thing but at least I am am interesting case for the residents and fellows.
I was on my third brand of IVIG when I had the anaphylaxis. First was Carimmune, then Octogam and finally Gammagard SD- very, very low IgA. I will be seeing a Stanford allergist in a couple of weeks, to see if there is some way to do the IVIG safely. It will have to be done in the hospital or at Stanford's Infusion Center. The center I was going to, for the last 4 years, will not allow me to receive it in their facility. I am too much of a liability.
For now, I will continue on the Plaquenil, wait for test results and see the team in 3 months again. Keeping my fingers crossed that I can start the IVIG again soon.
Thanks for asking about my appointment. I will keep everyone updated as I get new information or tests back. I really appreciate everyone's support.
I have seen them for my 4 years and they are the best of the best in our area!!! They will get to the bottom of this. I did have the antibody testing done with a skin biopsy and some blood...
They have prescribed my IVIG and i also had an allergic reaction and Aseptic Meningitis. and i still get it. I hope they can work it out for you too...
Hang in there, and give them time...
Shawna