I had an appt with a new Rheumy today due to insurance change. She had all blood work and radiology reports (chest x ray). She said that my ANA levels (25,000) was a false positive, the positive Jo-1 antibodies (which i have been told that this is one of the markers for PM/DM.) was also a false positive. The muscle weakness that i have in my arms and legs is probably thyroid related. and the Shortness of breath is also thyroid related. Anyone ever gone through this? I have explained that the other Rhuemy told me to come in ASAP if i have any muscle weakness or shortness of breath get in here because it is the PM or lung disease starting to flare. Now this lady says all the tests are false positive, and there is nothing wrong.
Did you ask her how it is she could determine that all the tests that were Positive, she feels are "False Positive's"? If you didnt ask, I suggest you DO.
Have you had a muscle biopsy? That would be the next step In "MY" opinion.
I was diagnosed with myositis in April of last year. NONE of my tests were "positive" for PM/DM, or anything for that matter. They DID'NT stop there, and did a deep muscle biopsy and it was THAT that said "active inflammatory myopathy". THAT was the definitive diagnosis.
Is there ANY WAY you can see a DIFFERENT Reumatologist? Are there anyother ones on your insurance plan. IF NOT is there ANY way you can get a "transference of care" through your insurance company? If your OTHER reumatologist was "In NEtwork" with your other insurance, you can request a "transfer" to continue to see him. NOT a guarentee that they will aprove it, but worth a try. Or you can talk to you orignal Reummy and ask him if he would accept your NEW insurance as "In Network".
I'm battling with insurance companies myself right now, and "jumping through THEIR HOOPS" is a game to them I believe! But MAY be WORTH YOUR while?
I wish you the best! Stay strong, and DONT be affraid to stand up for YOURSELF!
Take care, and GOD bless,
I found your message interesting. Last May, my husband was having muscle/joint pain (as well as other difficulties). His GP ordered blood work and it came back with a positive ANA and anti jo-1. He was referred to a rheumatologist who took one look at my husband and said "sleep apnea". The rheumy said, "I know you tested positive for a rare disease, but I don't believe you have it". We were not comfortable with his comments and got a referral to a new rheumatologist.
Through this new rheumatologist, my husband was diagnosed with Wegener's Granulomatosis (a vasculitis). Although Wegener's did not have anything to do with the positive anti jo-1, my husband did have the symptoms and lab work to confirm this diagnosis. After six months of treatment on chemo and steroids, my husband is still battling with pain. His joint pain has subsided but his muscles still ache daily. The rheumatologist has now (for the first time) ordered an EMG. I'm not sure what road he is trying to go down, but I sure wish this test had been done way back in the beginning. I had done some research about myositis' and always felt that my husband had too many of the symptoms and the lab work to confirm polymyositis. However, I did not want to jeopardize the relationship we have with our doctor. He really is one of the best in our area and he did help my husband get well enough to return to work. I think that some diseases are so rare that many doctors have a hard time believing they may have a patient with such a disease. Wegener's is rare enough that most doctors will never see a case in their lifetime. My guess is a positive anti jo-1 is very rare too. Therefore, doctors believe it's a "red herring".
Please do not put all of your faith and your health in one (or two) doctors. If we had listened to the first rheumatologist, my husband would be dead by now. Go with your gut feelings and keep pushing for more tests to definitely rule out a disease.
Also, if you are having shortness of breath, have you had a High Resolution CT scan of your lungs? My husbands lung x-ray was normal but his HRCT scan showed interstitial lung disease.
dandelion3, Thank you so much for your post. I am going to look up that disease and check into that. On saturday i had a mini stroke, but Dr's still have no idea what is going on. I have a call into my GP, i have not seen him since July. i am hoping that going to him he can find something since i am having problems with the specialists here. I am also considering going to RUSH hospital in Chicago. We live close so that should be good. Will you please keep me informed on your husband? Best of luck to you. I konw how upsetting all of this can be.