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 recently seen by a very well known medical center to evaluate my treatment plan for lupus and dermatomyositis, and now I'm completely confused.
Briefly, I had a negative/low titer ANA for many years and was told 'nothing' was wrong. After many frustrating visits with my rheumatologist, he finally agreed to run further testing. It came back showing a positive anti-Smith antibody, a positive Mi-2 antibody, and positive antiphospholipid antibodies. Finally, I had an answer to my years of suffering with SOMETHING not being right with me. I was diagnosed with systemic lupus and dermatomyositis.
After a year and a half of being on prednisone with very little, if any, improvement, my primary care sent me for a second opinion to a very highly regarded medical center. She was also concerned as multiple urine tests performed had gone from no protein to trace protein to 1+ protein during this time frame.
Well, the doctor listened to my symptoms and did a thorough examination. She then re-ran most, if not all, of the blood work I had had done.
I am shocked ... but she told me a week later that everything came back NEGATIVE.
EVERYTHING.
How could this be? I had the antibody tests run by a very reputable lab. I had MULTIPLE urine specimens over the past year (at least 6 or 7) showing the protein. Even the antiphospholipid antibodies came back as (high) normal.
By any chance, could being on prednisone have ANY effect on these results??? I can believe one test maybe being different, but we are talking multiple tests from multiple laboratories that were positive ... are now negative.
Can anyone help me understand this?
I'm crying ... because I feel I'm back to square one yet again.
"NOTHING IS WRONG WITH YOU."
I honestly can't even get this 2nd opinion physician to return my call.
I was recently seen by a very well known medical center to evaluate my treatment plan for lupus and dermatomyositis, and now I'm completely confused.
Briefly, I had a negative/low titer ANA for many years and was told 'nothing' was wrong. After many frustrating visits with my rheumatologist, he finally agreed to run further testing. It came back showing a positive anti-Smith antibody, a positive Mi-2 antibody, and positive antiphospholipid antibodies. Finally, I had an answer to my years of suffering with SOMETHING not being right with me. I was diagnosed with systemic lupus and dermatomyositis.
After a year and a half of being on prednisone with very little, if any, improvement, my primary care sent me for a second opinion to a very highly regarded medical center. She was also concerned as multiple urine tests performed had gone from no protein to trace protein to 1+ protein during this time frame.
Well, the doctor listened to my symptoms and did a thorough examination. She then re-ran most, if not all, of the blood work I had had done.
I am shocked ... but she told me a week later that everything came back NEGATIVE.
EVERYTHING.
How could this be? I had the antibody tests run by a very reputable lab. I had MULTIPLE urine specimens over the past year (at least 6 or 7) showing the protein. Even the antiphospholipid antibodies came back as (high) normal.
By any chance, could being on prednisone have ANY effect on these results??? I can believe one test maybe being different, but we are talking multiple tests from multiple laboratories that were positive ... are now negative.
Can anyone help me understand this?
I'm crying ... because I feel I'm back to square one yet again.
"NOTHING IS WRONG WITH YOU."
I honestly can't even get this 2nd opinion physician to return my call.
So sorry for your frustration, romeomustdie. These autoimmune diseases are confusing, frustrating, and aggravating. It's my understanding that most of the meds prescribed for autoimmune disease can skew test results because they suppress the immune system. When I first got sick in 2006, one of the first doctors I saw suspected Lupus and RA, but my blood work was always negative. (He called it sero-negative.) The Lupus wasn't diagnosed until 2010-2011 after a couple skin biopsies were done. I, too, have myositis, but I have PM and was told overlapping DM. The PM was diagnosed in 2008. Did you know that lupus can induce myositis?
http://www.lupus.org/answers/entry/...
http://www.webmd.com/a-to-z-guides/...
I'm no doctor, but because lupus can "travel" around in the body, your test results may have also changed because the lupus is someplace else right now. Just my uneducated theory. That's what the lupus does to me. Today it can be affecting my eyes, ears, and brains; but next week the lupus might affect my kidney and bladder. Autoimmune diseases can be elusive to doctors, so I try to be proactive myself by eating healthily and doing online research. Even though I can't totally regain my former robust health, at least I'm maintaining a measure of health. I hope you find what works for you. Best wishes, and don't give up.
Here is a link to the presentation from the conference. I found this very interesting. http://www.myositis.org/storage/documents/2014_conference/Presentations/What_your_autoantibodies_tell_us_about_your_disease.pdf
I know for me, I wanted to be tested for Jo1. My doctor had to research how to write an order for it. Then I took it to the lab and I am not even positive they pulled it right. When the results came back, my doctor wasn't sure how to read it. I love my doctor and think she really tries but she is not a Myositis expert. She is probably not alone in struggling to figure it out. I was appreciative she shared her lack of knowledge instead of pretending she had all the answers. We are learning together.
Great doctors are only good for us if they are literate with Myositis and that is a rare quality in my experience.
I am so sorry that you are left now without any answers. I would continue your search, ask your Primary to help you find a Myositis doctor, Ask the TMA at Myositis.org for a suggestion. Free to join and great information there.
Are you symptomatic?? Symptoms always trump lab results, have you had a muscle biopsy?? Some have to get that done to prove they have Myositis. I wish i had other answers for you...
I wish you well as you move forward. Keep us posted.