Re: was told by another board that someone could help me here
Hi, Shannon. Zorm just suggested that your read the "sticky posts" (permanent posts) at the top of the thread list. The one about test results contains a source with a long list of specialized tests (blood & other).
ANA is tricky. Plus, the odds of it being positive *differ* among the main groups of lupus. In *systemic* lupus (SLE), it's almost always positive. In the *intermediate* form, subacute cutaneous LE (SCLE), it's only positive 70% or so. In discoid lupus (DLE), maybe only 50%. (And I'm skipping drug-induced and neonatal.)
I ended up with a Dx of SCLE. I was positive for anti-Ro but negative for ANA. Had rashes for many years that looked like raised red welts, then in later years those welts would "bloom" into circles, mainly on upper arms and back; they barely itched and healed without scarring. (There are actually two forms of rashes in the SCLE subset; the non-annular one looks kind of like psoriasis but isn't.)
You have my great sympathy on the IBS! I also had an IBS-like problem, for 25+ years, so awful that I was hospitalized for it several times. Also, as you just wrote, I was anemic, the B-12 kind, and my potassium levels would go way out of whack. I understand that anemia is common in lupus---but that it can also occur due to malabsorption (which IBS could cause or contribute to, I would think).
I've been on Plaquenil for over five years, and it helped immediately. But the hardest thing was getting answers! Even with multiple skin biopsies, none of my suburban drs. "got" my rash or my other problems (low grade fever, migraines, urinary irritability, stones, joint pain, etc.) I suspect, but can't prove, that it was because my ANA was always negative. A teaching hospital a mere 20 miles from my home figured it out immediately.
It too a very long time for my anti-Ro result to turn positive. I suspect in the early years I was never tested for much, *maybe* ANA starting at some point. I never had the brains to ask for copies of my labs---but YOU could ask for yours! It may help to keep your own file.
I concluded afterwards that doctors differ incredibly. I read afterwards that SCLE was first described as a partly unique, partly similar form of lupus only in 1978 or so---so maybe my local docs had never heard of it? And that there are dermatologists who are also pathologists, meaning they do their own labs = "dermatopathologists".
My city rheumie told me I'd scored a "low four" on the "4 of 11" criteria for SLE, but that I had SCLE. I think it was the crietria I *didn't* fit that threw my local docs off. They kept looking for that ANA. My GP kept wanting me to go to Florida, probably so I'd get a malar (facial) rash, but I never got one.
For what this is worth... Give a holler if you want to! Best wishes, Vee