Many rheumatologists will NOT see some one without a positive antinuclear antibody test and/or positive SSA, SSB. Labial salivary gland biopsies don't seem to impress them. Eye tests even less.
I have higly + ANA-nucleolar, very +labial salivary biopsy, and +skin biopsy for PN, +biopsy for mild myopathy, labs disturbed looking like distal renal tubular acidosis, abnormal autonomic testing, diffuse esophageal spasm by manometry, (and probably some dumping syndrome) atrial fib, then add all the symptomatology of Sjogrens. I have had no luck with rheums, and was treated with IVIG via the neuro, who now feels that my symptoms have progressed 'beyond' Sjogren's. I am on sabatical from all treatment right now, until the docs get their act together, since IVIG was causing very severe headaches after several years of treatment. For now, I am treating my pain, my metabolic acidosis, and other issues as they come up. I am seeing an endocrinologist for an eval, because I haven't seen one yet and am concerned about my glucose levels which have at times been as low as 42.
In the case of negative ANA, I am not sure what is causing what, if small fiber neuropathy is the cause of Sjogren's like symptoms.....I have yet to be convinced that Sjogren's causes PN. Very few SSA-SSB+ patients present with neuropathy as a major issue.
There are sooooo many causes for keratoconjunctivitis, many of them very serious and treatable issues. It might take a while to sift thru them. I am still looking.....argh.