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Rockcandy hi & welcome. Yes, it's confusing! First some high-level stuff:

1. ANA is positive in multiple conditions, including lupus and RA---and I think Interstitial Cystitis, too. Therefore ANA in & of itself isn't diagnostic of anything. Further, I think ANA of 1:80 is only slightly elevated. It's a titer test, wherein some subtance is added to your blood sample to make the "bad stuff" visible, then some other substance is added in "titers", a bit at a time. The sample is inspected microscopically at each step, and the last dilution at which "bad stuff" is still visible is your reading. I think the scale goes 1:40, then 1:80, then 1:160, etc. One doctor/author considers 1:1280 indisputably meaningful.

2. Lupus has a set of diagnostic criteria which you can find in the sticky posts (permanent info posts) at the top of the thread list. RA has its own set which you could scout around for. Confusingly, RF can be positive in either condition, so RF in & of itself isn't "diagnostic", either.

3. There's also a sticky with "alternative criteria", things seen in the earlier years of people who later develop lupus. (I matched almost all.)

Re: your symptoms, I had the same & more. Huge fatigue and hair loss, but those can be seen in other conditions, too, e.g., hypothyroidism. (But I lost weight, not gained.) Frequent low-grade fevers. Pain (sometimes ghastly) in long bones of shins & arms; also in elbow and shoulder joints. My urinary problems were so bad that IC was considered (turned out to be lupus cystitis). For GI misery, I was tested repeatedly for ulcerative colitis & Crohn's (GI problems are actually very common in lupus). For migraines, I had brain scans. I too was told I had MVP. My B-12 was lower than yours, and my EBV was off the charts. At times I had elevated sed rate and depressed WBC.

After 20+ years at this level, I started getting photosensitive skin rashes, which pointed STRONGLY to lupus. Lupus band tests (deep-punch skin biopsies) proved it: they were done by the dermatopathologist my rheumatologist referred me to. The anti-Ro autoantibody was found in my bloodwork (and it's also seen in Sjogren's syndrome, another autoimmune).

The most important thing in lupus is whether major organs (heart, lungs, kidneys, brain) are affected. Mine weren't, so I'm actually considered "subacute" despite my years of up's and down's.

Your doctor spoke the truth: lupus can evolve very slowly; it's very hard to distinguish from other conditions, especially in its early stages; AND maybe this isn't and won't ever be lupus. I know you want to know more NOW---we get that here, we really do, so I'm glad you found us. Please do hang tough & post again when you can! Sending you my best wishes, sympathetically, Vee

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