I have a high titer (1:1280), speckled ANA. But no Sjogren's antibodies, which I'm aware a lot of Sjogren's patients don't have.

My dry eye is diagnosed and treated by a specialist. I'm trying to find an oral surgeon who takes my insurance for the lip biopsy. I've seen - no kidding - 3 rheumatologists. I was referred to the first because of the ANA and a (at the time) 4.7 cm ascending aortic aneurysm.

Rheumatologist in Boston are NOT diagnosticians. They want you to walk in with a diagnosed condition for them to treat. A high ANA and suspected vasculitis isn't enough. Oh, I have elevated complement proteins (C3 & total) and elevated cytokines (ILs- 2, 6, & 10). None of it matters.

So I got whole genome sequenced by a CLIA certified lab and it turns out that I have pathogenic variants on HLA-B for Behçet's, a vasculitis. Which might show in ANA, but wouldn't show in the common antibodies they run.

My CV surgeon referred me to yet another rheum I'll be seeing in April. She (supposedly) specializes in vasculitis, so maybe I'll have a different result.

One of those earlier rheums tried to gaslight me about my ANA being "normal" because the test he chose returned that result. Well, he ran an ANA test that actually specifically tests all the individual antibodies (Ro, Smith, dsDNA, etc. etc.). Some multiplex ball ELISA test, not the industry standard indirect immunofluorescence antinuclear antibody test (IF-ANA).

That ball test stinks, but it's cheaper for hospitals:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2628865/
"other is antigen specific assay that detects ANA and reacts with a single autoantigen i.e. dsDNA, SS-A/Ro, SS-B/La, Scl-70, Sm, Sm/RNP etc. In antigen specific assay multiple antigens are coated on to microtitre plates, usually a combination of SSA/Ro, SSB/La, Sm, and U1-RNP, with many also including Jo-1 and Scl70. This new test is both highly specific and sensitive and substantially decreases the time involved when screening large numbers of patient samples. The test is simple to perform, can be automated and does not require highly trained operators..."

So, either that rheumatologist didn't understand the difference between ANA tests or he was gaslighting me. Either is bad. He was the third.

The second was a second opinion on the first (who did nothing to investigate vasculitis beyond discovering the elevated complement proteins, which she also ignored). The second was also out the door the next week for a family emergency, which I should have been told. Because you can imagine how useful that consult was. But hey, they got paid.

Basically, I have had to be my own diagnostician. Specialists specialize and do not look outside their box. Rheumatologists, from my limited experience, are about the laziest specialists out there.

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