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Joint pain, chest pain, unknown autoimmune disorder. Taken Plaquenil and Prednisone. Normal CRP. Lupus?

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Practicing since : 1985
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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!
Posted Mon, 21 May 2012 in Lupus
Answered by Dr. Praveen Jadhav 7 hours later
Thanks for writing in. I do understand your concern.
1)     It indeed seems that you are suffering from undifferentiated connective tissue disorder. The symptoms do sound similar to lupus. However, only when the group of symptoms and investigations can be lumped together under the clinical features known to be typical of lupus, your rheumatologist will label it as lupus. In any case, it does not matter whether your problem is differentiated or undifferentiated as the treatment does not differ significantly.
2)     Most importantly, you should not feel disheartened or be afraid of rejection by your rheumatologist or any other doctor. It is your doctor’s duty to solve all your medical problems, including psychological, if at all they are psychological. The exact cause of an undifferentiated connective tissue disorder is not known. Autoimmune causes could possibly contribute to it.

Hope this helps. I would be available for follow ups.
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