I see no one has added to this post in awhile. How is your breathing have you figured anything out yet?

I have small fiber neuropathy and dysautonomia. I have the same breathing issues as you. No wheezing, no coughing and I'm convinced its from the small fiber neuropathy, namely autonomic neuropathy or the lungs. I'm also getting evaluated for sjogren's by one of the most top Ss doctors. And he said first blood tests, then saliva gland ultra scan, then eye test for dryness in a special way, then lip biopsy if two of the 3 tests dont come back positive.

The main thing is to get insurance to cover strong IVIG treatments. Thats the only thing that can restore nerve fibers quickly enough. Idk how affective it is with lung neuropathy. Also I dont think lung neuropathy shows up on typical lung biopsies or scans. i had all the scan just not the biopsy yet, im too nervous for it.. How was your lung biopsy?

I also suspect sarcoidosis too is not SS. i have very dry mouth and need to drink water all day long. But it could be from sympathetic overdrive... Tried to private message u but im new here and dont know how..