Re: I thought I had lupus but all tests but my spep and ana came back normal now what
Hi & welcome. My advice is to keep trying with a rheumie you trust. It can take a long time, even with good doctors, to sleuth these things out.
ANA can wax & wane with flares, so timing of bloodwork can be critical. And did your doctor run specific autoantibody tests (anti-ds-DNA, anti-Sm, anti-Ro, anti-La, anti-RNP, etc.) as well? FYI, in classic SLE, most people (not all) have a positive ANA at some point. But in some of the lupus subsets (variants), like SCLE & DLE, ANA remains negative much more often. (I ran into this confusion. I have the SCLE subset but stayed ANA-negative; so my local drs. failed to realize I had any kind of lupus due to my negative ANA. I was Ro-positive, probably for some time before anyone realized it.)
Clinical symptoms also wax & wane. The problem here is that many drs. want to SEE symptoms/test results firsthand before deeming that a criterion has been fulfilled. The "4 of 11" criteria for SLE are listed in a "sticky post" (informational post) at the top of the thread list. FYI, you do not have to meet criteria simultaneously; you can even meet them over years. Think of checking each off in permanent ink: once you've had it, it should be checkmarked forever.
The criteria apply to systemic lupus (SLE). People with DLE & SCLE can meet fewer than "4" criteria.
Have you had your rash biopsied by a dermatologist? The gold standard is a deep punch biopsy, PLUS immunofluorescent stain tests. Lupus rashes behave in a very specific & characteristic way under certain stain tests, thus can prove that a rash can ONLY be lupus & nothing else. (I got caught on THAT point, too. My local dermies did the skin punches but failed to tell the labs to do stain tests.)
You could also browse some lupus books, available in most libraries & larger bookstores. Dr. Daniel Wallace & Dr. Robert Lahita are both excellent authors. While nothing can substitute for capable doctors, you can sure develop better questions & a better feel for your doctors through reading.
What do your rashes look like? Are they in a place they could be biopsied (meaning not facial)? Just curious, as I was "rashy" for years...
Hope this helps some & that you keep posting. While I hope you do NOT have lupus, it makes sense to keep pressing for answers & help. If you do, know that many people remain pretty mild & can be helped a lt by medication. So hang in there! Bye for now. Sincerely, Vee