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Old 05-27-2008, 05:57 PM   #4
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Re: Test negative, symptom positive, diagnosis brushed off.

Moonkatz, welcome! Obviously, I'm just a patient, but just as "Life" wrote, your multiple miscarriages made antiphospholipid syndrome (APS) come to my mind, too. Is there ANYONE, say your Ob/GYN, who you can discuss APS with? I hope so.

And your very dry eyes & mouth make Sjogren's syndrome come to my (untrained) mind. It can occur "standalone" or in conjunction with lupus. Anyway, the autoantibody seen the most often in Sjogren's is anti-Ro. FYI, anti-Ro is also seen in systemic lupus (SLE) and in the subacute cutaneous lupus (SCLE) variant. Thus if anti-Ro is found in bloodwork, further nuanced thinking & testing is needed, to sort thru SLE, SCLE & Sjogren's.

Eye doctors can also Dx Sjogren's, using a variety of tests: Schirmer's (tests for dryness) & the Rose Bengal stain (looks for corneal pitting & scarring). But the one considered the most definitive is lip biopsy.

Another pitfall in the anti-Ro group is that ANA results in people with anti-Ro can be misleading. It's thought that 30% or more of people with anti-Ro have a negative ANA, because anti-Ro seems to "mask" the ANA results in some people. Some doctors call for *only* the ANA test, then quit without ordering more specific autoantibody tests, causing them to miss the boat on their Ro-positive/ANA-negative patients.

I'm aware of this because I fell into the SCLE subgroup that's positive for anti-Ro but negative for ANA. I baffled all my doctors for decades. Had horrendous GI problems, much like you describe, for 20+ years; urinary problems; anemia; weight & hair loss; fatigue; pain in joints & along long bones (shins & arms); sciatica; migraines; bizarre tingling; fogginess; etc.

Then I started getting torso/arm rashes, nonscarring circular lesions with clear centers. My dermies (6 or so) stepped up to the plate & also failed on something considered basic by better doctors. They failed to call for the "best" tests = immune stain tests on deep punch skin samples.

I finally went to a big-city teaching hospital rheumie & also a dermatopathologist. Then, finally, after many years, very quickly a Dx: SCLE, positive anti-Ro, negative ANA, no major organ involvement, met more than 4 of the ACR criteria. But luckily, Plaquenil has helped me tremendously, as has sun avoidance.

I regale you with this () to alert you to the level of doctoring that's sometimes needed to get answers. Symptoms rise & fall in many people, which can make all manner of test results "iffy". But if you fall into one of the subgroups, it can be even harder to get answers.

Another thing I realized, way late: in this area of medicine, your lifetime medical history can speak volumes to a savvy rheumie. So many of the things listed in the "sticky post" that contains "alternative criteria" were familiar to me---but only to my last (and currrent) rheumie. Right away, he saw my history as connectable dots.

I hope you can get some help quickly, maybe via an OB/GYN or eye dr. Better yet, a rheumie who would agree to some sort of reduced & prolonged payment plan. Maybe you could get some names from a local support group, of doctors who will work out special plans with people.

If anything here catches your eye, just you give a yell, OK? Meanwhile, I send my best wishes, Vee