I have been told that the actual value for the ANA doesn't correlate with disease severity or flares. (I had 1:5280 and was indeed sicker, but whatever...). Blood work isn't diagnostic, I have been told (I also have very high anti-centromere antibodies for scleroderma but not diagnostic).

I would focus on treating symptoms rather than diagnosis. Do you have arthritis? Does the sun flare you? Have you ever taken steroids and had relief? Have you done any PT?

Clearly something might be going on with your immune system. I hope you can find help. Functional medicine might be of benefit. I saw an integrative medicine doc and am trying curcumin and a few other things for inflammation.