Angelina, I think if you were to browse some hardcovers, they'd explain better than I just did how cutaneous and systemic findings relate to one another, and how the ACR criteria are typically applied. Try printing the criteria list & checking off which you've met for sure. That's a good start. And btw, that's exactly what my metro specialists did, to illustrate where I stood. (They know how to communicate, which my suburban drs. didn't.)
Personally I view the list as comprised of "biggies" and "lessers". While all are useful in diagnosing SLE, some seem to "weigh more" because they indicate severe illness, or the potential for severity.
People with "cutaneous-only" lupus have rashes (discoid or some other lupus rash), and they don't meet 4 or more of the 11 criteria, and they don't have circulating autoantibodies (ANA and the more-specific autoantibodies). I've read that only about 5% to 10% of people who present with only discoid (scarring) lesions advance to full-blown SLE.
But what DOESN'T FIT above scenario is your ANA, which does look very high at 1:800. (Although I'm not familiar with that measurement, it sure sounds high! Problem is, as you know, that ANA alone doesn't diagnose anything.)
What you'd EXPECT in an acute person would be some of the "biggie" criteria. "Blood abnormalities" (hemolytic anemia, low WBC, low platelets) and/or "immunologic disorder" (antiphospholipid antibodies, lupus anticoagulant, anti-ds-DNA, false-positive syphilis, or positive anti-Smith). Or serositis (lung lining inflammation). Or kidney disorder (protein in urine or sediment seen under microscope). Or neurologic disorder (unexplained seizures or psychosis). Or oral ulcerations (because they point so strongly to lupus).
To me, the other criteria "weigh less", so I'll call them "lessers" because they can also be seen in other conditions---OR, because in & of themselves, they're so much milder than the "biggies". For example, both rashes, malar and discoid; sun sensitivity; and arthritis. Even if you had ALL of these with nothing else, you'd be considered pretty healthy, at least in the world of lupus, that is.
In your shoes, I'd always ask for copies of my bloodwork. And I'd want all the tests and evaluations that either disprove or prove the "biggies"! Make them PROVE to you that they're evaluating for these. In my book, that means urinalysis and bloodwork EVERY SINGLE VISIT, and searching questions.
But I believe it's possible to have milder lupus (like discoid-only, or mild SLE) PLUS another condition that could cause a very high ANA. For example, Hashimoto's thyroiditis. So they should be looking for that scenario, too.
Re: sun, if you're not wearing hats of tight weave with decent-sized brims, then you're getting a lot on your face & scalp? Not good, as you don't want discoid lesions on your face or scalp because they can cause permanent scarring and/or hair loss. (I had my only discoid surgically fixed because it wouldn't stay healed. It was on my face. Surgery hurt & cost a bundle.)
I'm female and was dx'ed in my 40's. I had problems piling on from early childhood. Worst episodes: life-threatening reaction to heavy sulfa antibiotics (first pneumonia, then extreme fevers & convulsions); then as an adult, bout of what may have been mesenteric vasculitis. At 8, I had widespread bullous lesions (watery blisters). At 13, a year of crippling pain with elevated ESR, low-grade fever, and extremely low WBC. Ten years later, chronic GI problems started. Next came urinary misery, migraines, and anemia. SCLE rashes came last, in late 30's, by which time I was practically DERANGED
. In all those years, only the three life-threatening episodes, but the rest made me miserable for weeks at a time. I found it confusing & numbing. Saw many doctors, but none suspected lupus until 2-3 years before I was dx'ed. The SCLE rash *alone* should have provided the answer, but my local specialists had never seen it. Well, DUH, it was officially named/described 20-some years before I got it. But my metro drs. needed only about 2 seconds to size me up, I swear. (There's a joke in this somewhere?)
BTW, have you read the "alternative criteria" in the sticky posts? I met 11 of the 14. One of my metro drs. said that alone would make him dx lupus, even if he'd never met me in person.
I view myself as a "slow-moving subacute". In contrast, I met a woman whose kidneys suddenly failed at 16 whom I view as a "lightning-fast acute". She had a double kidney transplant and has been reasonably stable since. So that's how much this stuff can vary, is my point: it's really all over the map, in terms of both suddenness and severity. I know you're worried, understandably, but so far the GOOD part is you've had no horrible acute hits. I know you'll keep looking for better answers, and that's exactly what one should do. Let us know how your dermatology appt. goes & whether you get to discuss all those other criteria AND possible secondary conditions, OK? Meanwhile, sending you big hugs & hopes that you'll start getting solid answers soon! Always, Vee