Question: I'm a 31 year old female. For the past 1 year, I have been treated for an unknown autoimmune disorder. I am on Plaquenil and low dose prednisone only during flares. I have repeatedly had a positive XXXXXXX for the past 10 years or so. (1:320, 1:640, 1:80). At first it was just monitored but I started to deveop symptoms through the years. My most recent XXXXXXX a few months ago was 1:640. All other labs have been repeatedly negative. Normal CRP. Highest Sed rate has been 23-25, not concerning to my rheumatolgoist as it's close to normal. Over the years, I have developed "flares" of joint pain (knuckles, ankles, knees--no redness, no swelling), severe episoes of fatigue, rashes on my upper thighs that never goes away, sun induced dizzy spells and that induce flares, and severe digestive/GI issues, dry mouth, dry eyes, muscle aches during flares. I had months of chest pain that hurt with breathing but CT (after postiive chest x-ray) showed up negative. I also have interstitial cystitis (IC). On exam, both rheumatologists (current one is a 2nd opinion) have noted by extremely dry mouth and tongue. Both docs were sure I had sjogrens but labs (anti-Ro) have been normal. Lip biopsy also was negative. (All specific antibody tests were normal as was the double stranded DNA test.)

My rheumotologis thas said he knows I have an autoimmune disease but he is unsure of which one but will continue to treat and monitor.
1.) what does it sound like to you? (lupus or other?)
2.) my fear is that because since nothing shows in the blood and he cannot "See" my pain or fatigue on exam, he will eventually stop treating me, think I am a bother or 'crazy" or push me elsewhere. Does this all appear to be autoimmune to you? This is frustrating explaining my condition to others. I'm in the undifferentiated connective tissue disease category for now.

Thanks for your input!