Re: waiting on referral
Hi & welcome. I'm sorry for your problems. I also think you're wise to see a rheumatologist. I'll add a few odds & ends I learned the hard way.
It's possible to have lupus without a positive ANA. In one "subset", discoid lupus (cutaneous-only lupus), people meet fewer than 4 of the ACR criteria and are almost always ANA-negative. BTW, those ACR diagnostic criteria are in the "sticky posts" (permanent info posts) just above the user threads.
It's also possible to have *systemic* lupus with a negative ANA, but this is very rare, perhaps only 3-5% of all diagnosed lupus. In this subgroup, anti-Ro is positive but ANA remains negative. The rashes seen in this subset tend to be the two so-called "SCLE" rashes.
ANA can fluctuate as flares come & go. Plus there's a point in time for most patients that ANA turns positive for the first time! So no matter what ANA was the "last time", if you have symptoms, it makes sense to have a full round of new tests, including more specific tests for the "ANA subtypes". Examples of the subtypes are anti-ds-DNA, anti-Sm, anti-Ro, anti-La, anti-RNP, antiphospholipid, etc. (There are a bunch.)
The gold standard for skin tests is the "lupus band test" (LBT), which may be done by a really good dermatologist or by a dermatopathologist. (Dermatopathologists tend to be found at the larger teaching hospitals; they're both dermatologists and pathologists, thus can do their own labwork.) In the LBT, the punch is examined under a microscope for cellular changes. Next---and this is part that can prove lupus---the punch is subjected to immunofluorescent stain tests that can very often (not always) light up in linear bands considered virtually diagnostic of lupus. What the stains are lighting up: depositis of "immune junk" that have been deposited between the dermal & epidermal layers. This deposition is considered unique to lupus.
There's also a "sticky" on skin rashes in lupus. While only two rashes "make" the ACR criteria, there are actually a fair number of lupus-specific rashes. And if you have a lupus-specific rash, well, you do have lupus to some degree, but not necessarily systemic. (The "degree" you have is determined by how many of the criteria you meet: fewer than 4 vs. 4 or more.)
Photosensitivity is also a criteria. In people with lupus, sun can induce rashes, and/or cause overall symptoms to flare.
I'm glad you found us here! Sending warm wishes, sincerely, Vee