Re: Possible lupus negative blood tests.
Hi. I think it's possible in several scenarios, but these may not be all!
1. DLE (discoid lupus) is the mild subset: it's not "systemic" but can cause cosmetic damage (scarring and depigmentation). Circulating autoantibodies aren't present, meaning no ANA (the general one) or any of the specific ones (anti-ds-DNA, anti-Sm anti-Ro, anti-La, anti-RNP, etc.)
2. ANA-negative SLE, aka Ro-lupus. In this, ANA stays negative but anti-Ro is positive. This is RARE, maybe 3-5% of all SLE. Likeliest rashes are the two SCLE's, but malar is possible.
3. Slow-evolving SLE.
4. ANA can be hard to catch, as it can rise/fall as flares build/recede. Problem is, if ANA tests negative, many drs. don't watch/test further, or test for more specific antibodies (see #2).
In your shoes, I'd want to know/do
1. Are your rashes lupus-specific? Best way of telling is biopsy *including* immunofluorescent stain tests; this is the gold standard for possible lupus rashes. What do they look & feel like? Do you notice any correlation to sun? BTW, a dermatopathologist may be a better bet than a "plain" dermatologist.
2. What blood tests were done? ANA only, or were the more specific autoantibody tests done, too? (BTW, I'd collect copies for my personal files.)
3. What kind of anemia?
4. Read! You'll get insight into how well your dr. understands lupus, how well he communicates, etc.
I sympathize. I had a low-odds presentation (per #2 above). I saw many suburban specialists before taking myself to a metro teaching hospital. Answers were readily available thru my rashes, had the local drs. just biopsied those *correctly*. My city drs. were lightning fast, and I'm doing much better now. Hope this helps some & that you post more when you can. Sending hugs, Vee