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Blondie85 05-18-2012 08:33 PM

Time to see a rheumatologist?
Hi, new to the site but was hoping to get some advice. Went to my primary for what I thought was a stomach virus - doctor thought it might be IBS. Clean colonoscopy and some slight inflammation in my esophagus. My abdomen is still hurting and now the rest of my body is as well.

Blood work came back: sed rate 60 two weeks ago, he took it again and it's at 70.
This second time he did a few others:
Ana positive - 1:640 titer
C-reactive protein 2.4

My doctor keeps ordering imaging tests to look for tumors, then saying it could just be an infection, but then in the same breath says it might be lupus. Which I understand is extremely tough to diagnose, but I'm feeling a lot worse each day.

I was wondering if I should consider going to see a rheumatologist and whether or not it might be lupus? I have fatigue, joint pain, hair loss off and on, chest pain, numbness in my hands and legs - and now this weird stomach thing (which I'm told makes an autoimmune diagnosis extremely unlikely). But I feel like my doctor just keeps giving me more tests and drawing more blood with these abnormal results and then doing nothing.

Any help would be greatly appreciated!

VeeJ 05-19-2012 03:28 AM

Re: Time to see a rheumatologist?
Blondie, have you seen the diagnostic criteria in the "sticky posts" (permanent info posts) at the top of the thread list? You'll see 11. Generally (but not always), you must meet 4 or more to support a dx of systemic lupus. They may be met over time, meaning not necessarily simultaneously. Envision checking them off in indelible ink: once met, each is permanent. (That's how my good drs. explained the criteria. In retrospect, my bad drs. didn't get them at all.)

ANA is positive in SLE something like 95% to 98% of the time, the exception being a "subset" called Ro-lupus (or ANA-negative lupus). I believe CRP is associated with both lupus and Rheumatoid Arthritis; but I don't know its reference range, meaning how high 2.4 is (sorry).

When ANA elevates, typically a dozen+ more specific autoantibody tests are run, e.g., anti-ds-DNA, anti-Sm, anti-RNP, anti-Ro, anti-La, etc. Only several are considered virtually diagnostic of lupus, while the others are fuzzier (meaning can occur in lupus and other conditions, too). Have those more specific tests been run?

When I struggled with severe IBS for 20+ years, local drs. never suggested lupus as a possibility until I started getting skin rashes after sun exposure. I was shocked (actually enraged :D) when the metro specialists I finally saw told me that GI problems are actually VERY common in lupus.

To your main question: YES, I'd see a rheumatologist if I were you. You could also borrow library books about lupus (they have far more details). The best discuss not just lupus, but its close cousins (Sjogren's, RA, etc.), and explain how lupus is differentiated from those others. I hope this helps some & that you keep posting here. Good luck & best wishes, sincerely, Vee

P.S. I had neuro-like tingling, too, in arms & legs... not sure if caused by lupus or the anemia brought on by the lupus. Really unnerving! Plaquenil has helped all my longstanding problems greatly, incl. the IBS-like misery.

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