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Old 03-24-2008, 10:26 AM   #3
dandelion3 dandelion3 is offline
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(female)
 
Join Date: Mar 2008
Location: Grass Valley, CA
Posts: 16
dandelion3 HB User
Re: Strange Rheumy appt.

Hi,

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.

Good Luck!