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Teeha, I think it's QUITE possible that you can have a LOT wrong over many years, yet have "major organs" remain OK. That would describe me. I've only met personally one woman with same SCLE rash as I had. She ALSO had ever-worsening problems from early childhood. Her major organs also OK, but she tested positive for antiphospholipid syndrome (I didn't).

Did you see the "sticky post" about "alternative criteria"? One mentions anxieties like agoraphobia, claustrophobia, fear of heights, etc. As a child, I was "out there": loved flying, roller coasters, etc. By my late 20's, I was shaky & clammy in the subway, at the top of skyscrapers, even driving. But after Plaquenil, these episodes stopped cold. Hopefully you'll find same!

That's funny, your saying that you're your own worst enemy. I said same about myself. When I was Dx'ed, I didn't know whether to laugh, cry, or bang my head on the wall. But my history made so much sense finally.

As for having many symptoms of SLE? Well, yes. As explained to me by rheumie & dermatopathologist from major teaching hospital, SCLE blurs right into SLE. It's a "variant" or "subset", with some distinct rashes & some distinct blood findings. And even those can blur: a small group has SCLE rashes/bloodwork *on top of* the ones more typical of "classic" SLE. In SCLE, you're "eligible" for same range of problems seen in SLE; however, odds of major organ involvement, especially CNS and renal, while certainly there for SCLE, are believed to be lower than in classic SLE.

FYI, I think SCLE was only given its own name in the late 1970's.

Did you test positive for any autoantibodies? Have you read that anti-Ro patients may be the most photosensitive? And that people with lupus are "eligible" for multiple kinds of rashes? (I had all SCLE nonscarring, then got one big "discoid", on my face, naturally.) Only mentioning that in case you haven't started using sunblock, wearing hats, etc. If you haven't diiscussed sun with your dr. yet, please do. You do NOT want scarring lesions, permanent hair loss, etc.

I hope you keep posting here! It's obvious you've read widely & have much to share that could help others as they struggle. And let us know how your additional tests go, OK? Bye, with best wishes, Vee





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