Dear CS, You can NEVER talk too much here. Talk all you want!
My Dx took years, but I wasn't "classic". I ended up being Dx'ed with a "subset" of SLE called SCLE, which may represent less than 10% of all Dx'ed lupus. So that didn't help. And I stayed ANA-negative, which happens in SCLE maybe only 30% or less of the time, so that didn't help, either. SCLE was only given its own name & unique identifying criteria in 1978; my suburban drs. never even mentioned it as a possibility, as if they'd never even heard of it---another sizeable hurdle.
None of my standard drs. ever mentioned lupus. It was a hospital radiologist doing a kidney function test who let the cat out of the bag. I flew into a rage with my GP over a hospital hall phone while waiting for prelim results. (At least your drs. have been upfront and have used the word "lupus".)
I went right home that day and started researching big-city rheumies, then waited a few months until I had another huge rash, then asked my GP for the name of HIS best choice for my new rheumie. He dragged his feet, but finally picked a practice, which was the same one I'd picked. From there, it took less than one month for a Dx and treatment.
The dermatopathologist the city rheumie sent me to see, as part of his complete retesting, had me recall all my old skin samples from the labs that did the original testing; then HE retested them. Surprise, surprise: my skin samples had been "grossly positive" all along.
As you can see, I wasted a lot of time. That's the main reason I post here, I think, so *maybe* someone else can read something I may write, however sloppily, that can help them get onto a faster track. So that's it, the expurgated version.
Bye for now, Vee