Re: Different Titers, Confused
FL FlowerGirl, hi. I just realized there's something more important to consider about ANA, beyond how dilution tests "kinda sorta" work!
Lupus comes in different "gradations" or "subsets", for lack of better words, and I *think* the odds of having positive ANA vary greatly across those groupings. My drs. speak in terms of these groupings, which seem to spring *loosely* out of rash types; but I note that *books & articles* don't seem to speak in these terms very often. (But please take with big grain of salt, because I'm only a dumb patient, OK? Plus, it's clear that for people who never get rashes, these groupings are not germane!)
1. discoid (DLE), meaning someone who has only cutaneous disease = scarring &/or depigmenting "discoid" lupus rashes, PLUS some non-life-threatening things like fatigue, joint pain, etc---meaning these patients initally meet fewer than 4 criteria. I *think* ANA is negative in this group, unless the patient is in a small subgroup that progresses to full-blown SLE.
2. subacute cutaneous (SCLE), meaning someone who presents with ONLY one type of rash = SCLE rash, either annular or psoriasiform. The range of problems possible in this group is actually the same as in SLE, *but* SCLE patients are believed to cluster on the milder end of the SLE spectrum. Many in this group meet 4 or more of the SLE criteria at time of Dx, but those tend to be the milder criteria. Anti-Ro is the autoantibody seen most often. But ANA isn't so clear-cut: it's positive in only roughly 70%. It's believed that in some people, anti-Ro actually "masks" the ANA findings.
3. SLE: here, as we've read & been told, ANA is "almost always" positive. The few cases where it *isn't* are seemingly the ANA-negative anti-Ro's described in group 2 above. Within SLE, doctors & medical checklist forms often use further subcategories like "subacute" (no major organ involvement) vs. "acute" (with major organ involvement).
My point is you can have some degree of lupus WITHOUT a positive ANA, like DLE-only; or be in that small group within SCLE who remains ANA-negative.
I fell into group 2 but remained ANA-negative, which TOTALLY confounded my local drs. They were SO SURE it couldn't be lupus. In marked contrast, my big-city drs. knew immediately what to test for, to get the needed proof.
What I took from my ridiculous experience: to keep trying, no matter what you're told by Dr. #1, 2, etc. BTW, thank you for your kind words. I'm so glad you're finding people here to talk with, at a time you really need company. I know how that feels---which is why I post here. So let us know how you're doing, OK? And hang tough! Warmest wishes, Vee