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Hi, kathyq.

I had stuff going on since childhood, but no rashes until my late 30's, when I started to spend weekends at a beach area. I sought help for years (about 8) before I got answers and treatment.

I saw local doctors; had the rash biopsied about 5 times; went to rheumies, dermies, urologists, gastroenterologists; had kidney function tests & MRI's... the whole gamut, in other words. Yet I remained ANA-negative and no autoantibodies were found. I wasn't even aware until about year 6 that lupus was a possibility.

Yet that rash kept coming on, usually 4 times a year. I became anemic. Horrible fatigue. Lost weight (and I'm small already). Depressed complement (one, not sure which). Cluster headaches. Prone to dropping things and sitting down suddenly. Constant feeling of inflammation. Early osteoporosis and early menopause. Tingling, numb sensation in my arms. Occasional horrific pain in elbows and shoulders, with moderate pain most days. Kidney stones. Horrible IBS (hospitalized twice for that alone). Fatigue growing worse over time. Etc.

I finally took myself to a teaching hospital rheumatologist, who took one look at the rash, berated my local doctors colorfully, showed me his notes about his first suspicions, and referred me to a dermatopathologist. I got my old lab skin samples and reports sent to the d/p, who actually retested them [weird, huh?] and did a new skin biopsy.

Dx was subacute cutaneous LE = SCLE, which overlaps quite a bit with SLE, plus mild vasculitis. Turns out that SCLE is an intermediate form of lupus, first described as a separate, unique subset in 1978, and thought to be the bridge between DLE and SLE. Symptoms can vary and extend through the whole range of SLE, but the worst (kidney & CNS involvement) happen less often in SCLE than SLE.

And here's the kicker, which explains my persistently clean bloodwork: the odds of ANA being positive in SCLE are about 70/30, ditto with the autoantibody most often found in the subset, anti-Ro (also about 70/30 odds). The d/p told me I was in "a subset of a subset", as he so graphically phrased it, meaning in the 30% for which bloodwork comes out negative.

I've read that the odds of negative ANA in full SLE are pretty low, maybe 3% at most. But I turned out to be in a subset with higher odds (30%) of negative ANA.

I actually stumbled on a woman who works at a local library one summer. The staffer at the desk fetched her out of the lunchroom to see MY ARMS. Weird moment. We had twin rashes: great big red rings all over upper arms and back. We looked at each other and started to cry!

In time, her ANA eventually turned positive, also her antiphospholipid bloodwork. I remain negative for both, four years after Dx, and my blood values are back to normal. I still flare & now get mouth ulcers, too. But otherwise, things could be much worse!

Anyway, I was stunned & yet not stunned at the Dx. Why did it take so long, I wondered? My rheumie actually said he'd have Dx'ed me with SCLE even if the dermatopathologist's immunofluorescence tests hadn't come back as being "hideously positive" (which they did), based strictly on my medical history and the blood values that *were* off.

But I was still mightily angry that I'd gone so long without help, maybe mostly mad at myself... for not taking the reins sooner... In the final tally, all it required was me deciding to go to a teaching hospital, to get to specialists trained to look beyond bloodwork---which may NOT hold answers, as I described above. At time of Dx, I was actually a "4" on the SLE criteria, but without ANA and autoantibodies.

Anyway, it was my last skin biopsies that held the answers, but only when performed by a unique specialist. Both he and the rheumie, though, told me the old biopsies were totally characteristic of lupus. So it was my local rheumies & other specialists who---well---blew it.

All of this is a really long-winded way of saying that your doctor, interested ONLY in the ANA, is not seeing the range of the disease in the same way the rheumie I now use sees it. I suspect the larger-city specialists *may* be more willing and able to interpret the "4 of 11" criteria in the way they are meant to be interpreted. And that "standard" doctors may get skin biopsy results that have "findings" but no formal Dx affixed by the lab personnel---leaving the doctor to apply his limited understanding and his biases to highly technical skin lab results.

I really, really hope that you find someone to give you the help you need. Am hoping to see some day soon a post from you announcing a real breakthrough! All my best to you, from Vee





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