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Dear ShirleyCurley,

Welcome! I think I speak for all of us on one point: we are always interested in each others' results, appts., etc. I think that you should stick with us, as long as you choose to, that is.

On whether or not I think you may have lupus: well, with no medical training whatsoever (to put it mildly :D ), I can't say in any professional sense, obviously. But of what you wrote, things that ring bells with me personally are fatigue, IBS-like symptoms, increasing reactions to sun, rashes, headaches, muscle & joint pain, back misery, and hair loss. (Things I have no experience of personally are vitiligo & hypothyroidism.)

Have you read the "sticky posts" at the front of the board, on the "4 of 11" lupus ACR criteria for SLE, the "alternative lupus criteria", and antiphospholipid syndrome (the blood clotting disorder common in lupus)?

I want to mention a few key things about the "4 of 11" lupus criteria list: (1) The criteria apply only to *systemic* lupus (SLE). (2) They do NOT have to occur all at once, but instead should be applied over your entire lifetime. Think of checking each off in indelible ink. (3) Even if you do NOT match 4 or more criteria on this list, yet or ever, there are so-called "lesser" lupus "subsets" or "close cousins" to systemic lupus that some people eventually fit into better. The "subsets" would be subacute cutaneous LE (SCLE) and discoid lupus (DLE). Perhaps more germane, the "close cousins" would include such things as undifferentiated connective tissue disease (UCTD), mixed connective tissue disease (MCTD), etc. (4) While only two autoantibodies qualify as flat-out lupus criteria (anti-ds-DNA and anti-Sm), there are about 16 or more (!) antibodies &/or serum complement aberrations seen in lupus. It's just that only the two listed are "specific" enough to count as a "criteria met".

Re: IBS misery. I was shocked to find GI problems occur in a whole lot of lupus patients, something like 40% or more. *BUT* I think IBS-like problems also occur in thyroid patients?

RF being elevated: I *think* this can happen in RA, in lupus, in "rhupus" (sort of a lupus/RA combo syndrome), and maybe some other things, too...

In your shoes, I'd ask for a copy of all test results for your files. I'd also look to see if a whole slew of other tests were done, in addition to RF (like ds-DNA, Sm, Ro, La, serum complements like C3 & C4, antiphospholipid, etc.)

I hope you do post further when you get same. Anyway, I'm sure others will chip in soon. I'll say "bye" for now. Best wishes, Vee (Dx'ed with the SCLE "subset" in 2000, with positive anti-Ro but negative ANA)





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