Thank you both for your responses. Anita, this may sound silly, but are "fragments" enough for analysis - do they not need to be whole glands? I'm not on any medication to explain the dry eye. My goal has been to figure out what's causing the small fiber and autonomic neuropathy so that can be treated and hopefully improve my dysautonomia (POTS) symptoms. Amanda, I don't know how you found a Rheumy who would diagnose Sjogren's without positive blood or biopsy, but good for you and I hope the treatment is helping you feel better.
Part of that may have been the way my then PCP referred me. For the first time in 3 years, she actually examined me. That included my hands, the tenderness and weird appearance of my arm muscles, my obviously horridly dry crusty nose, beyond dry as a desert eyes, after a few trips to ER and urgent care, barely any saliva in my mouth, etc, plus the fact I already had one AI - Hashimoto's autoimmune thyroiditis. PCP's impression and referring diagnosis was scleroderma and Sjogrens.
Plus my opthalmologist's dx of Sjogrens primary helped. Definitely had almost no tear film to speak of on my corneas.
I haven't yet been to dermatology for the skin issues. PCP who initially referred me to Rheumy definitely saw indications of connective tissue related AI.
Rheumy based his findings on exam, medical history, I was in obvious flare at first visit dry everywhere, including dry bum, plus he is knowledgeable enough about Sjogrens that he acknowledges that lab tests and lip biopsies don't always show positive even though the patient clearly has sjogrens. Plus, I've responded with improvement once treatment approach began for sjogrens.
Plus I have prior history of possible MS, again that was during a flare years ago, which has overlapping symptoms. I'm not convinced MS is completely ruled out actually. Those symptoms returned and it's been 12 years since last brain scan, and prior ones were NOT normal - showing multiple white matter lesions.
It's very confusing to me actually, as I am more used to having medical issues that have definitive tests and definitive consistent results.
So at this point, symptoms are being treated and it is helping.
Sometimes I do wonder if, in the absence of definitive positive results, the actual diagnosis is more the doctor's judgment. Some, like my ENT, have a different opinion. She messaged me after lip biopsy all happy that I didn't have sjogrens. Changed her dx to SICCA. But last visit with her, she had upgraded dx to Sjogrens.
I read in the threads here that some test positive only to later test negative.
AI's are simply confusing. As far as the current diagnostic criteria, the only thing I was missing on the list was the lab and lip biopsy validation.