Dear Kitten Paws, Much of what I divined from my doctors' remarks over the years re: blood work and lupus, was inaccurate. Their remarks were cryptic & didn't convey the broad picture. And they said so little, to keep me out of their hair, I suspect.
Try reading again the "sticky post" with the ACR criteria. You must meet at least 4 of these 11 AT SOME TIME, but not necessarily all at once, to be Dx'ed with *systemic* lupus. I bet many drs. insist on seeing your "matches" with their very own eyes. So if your problems come & go, or if you switch drs. al lot, important info can get buried.
LESSER lupus forms (meaning not "systemic") also dovetail into this list. That is, you don't have to meet "4" to have some form of lupus---you have some LESSER FORM. For example, with discoid lupus (DLE), you could be photosensitive, tired & achey, and get scarring lesions; and your odds of positive ANA are only about 50%. In subacute cutaneous LE (SCLE), which is fairly rare, I think, many people do meet 4 or more, but they typically get one of two other rashes instead of the butterfly, and ANA is positive maybe only 2/3 of the time, and anti-Ro is the prevalent autoantibody.
Only two items in the list are considered "highly specific" to SYSTEMIC lupus: anti-ds-DNA or anti-Sm autoantibodies. If these are present, they are pretty much "presumptive". Can you have lupus without these? Yes---but things are less clear & can slow down to a crawl, is my best guess. In his lupus hardcover, Dr. Wallace actually lists SIXTEEN antibodies & blood complement abnormalities seen in SLE. (But he's SUCH a specialist. I bet most drs. don't know fathom these nuances.)
The more generic ANA test is not definitive. Why? It can be positive in various diseases, or due to a family tendency, or because of a passing virus. So while ANA is a useful clue for SYSTEMIC lupus, it's NOT "diagnostic" of SLE.
"Kinda sorta" people can stay the same for years. Or end up being Dx'ed with a "lesser lupus", like DLE, SCLE, etc. Or end up being Dx'ed with an autoimmune that's in the same ballpark, like MCTD (Mixed Connective Tissue Disease), UCTD (Undifferentiated Connective Tissue Disease), RA (Rheumatoid Arthritis), etc. Or become asymptomatic of everything in this ballpark.
Dr. Daniel Wallace writes the best summary I've read, in his lupus hardcover, in the chapter titled "Is It Really Lupus?" (is in most libraries & bookstores).
I turned out to have SCLE, one of the variant lesser forms. My anti-Ro was positive but ANA was negative. This is a good example of how someone can dovetail into the ACR criteria, i.e., to have lupus but not the classic SLE kind.
Kittenpaws, can you refresh us on where do you stand? What are you 100% sure of? What drs. have you seen? How long has it been going on? (Etc.?) With my best wishes! Bye for now, Vee