Same here, 25 years later. Any doctor, NP, PA can order almost any test, and can read/interpret numbers. just Google: who can diagnose autoimmunes: as a starting place; then search each listed - most doctors NPs, PAs, have heard of us, but we are the anomalies, even in rheumatology. Most will suggest rheumatology to try to get us to someone with more experience to try to get us the best care. Then we must know the "business" we are dealing with - some groups limit what their primaries can do for any number of reasons, others allow their doctors to partner wth us to our benefit. The people caring for us are answering their calling - but the business office, the CEOs and stock holders call the shots. Some welcome a competent, articulate, consistent "patient" - some do not. I give everyone a fair chance; should it fail, I move on and away. The answers are out there, and often take "pulling teeth" to get them. Just don't give up on yourself - the book of rheumatology is incomplete, & only reads what we/they think/know to date, and only a guide at that. Each of us adds to the narrative. Google is also just a tool - an electronic encyclopedia (giving away the century of my birth) to help understand, define, solidify, enhance, provide ease to the office visits. and yes, even guide a diagnosis - I was experiencing 2nd episode of shingles symptoms, but no rash (again) seen by derm or PCP; asked google; no-rash shingles?" YES - zoster sine herpete aka/internal singles/aka no rash shingles. took to PCP, ordered test, VERY positive. another very rare (my 4th confirmed). Is easy to get discouraged - please don't - we can't get answers if we stop asking questions.
There is a Google Scholar website which is phenomenal and posts a lot of notes and studies and retrieves whatever you type in the subject line. I got some answers from that as well. You are correct. Some specialists are very happy with a patient that knows their own body and asks questions....others not so much. You are correct. We don't get answers if we stop asking questions! We must press onward my friend!