u/FuzzySheepherder897

VENT: I have early signs of neuroSjögrens (some elevated early antibodies) and started getting such painful, non-length dependent SFN symptoms after a big flare in July.

Ive been facing a lot of dismissal because of course all of the basic MRIs EMG/NCS are normal. I got the SFN biopsy and it showed small axonal swellings, which I know isn’t diagnostic but in the context of my symptoms shows that SOMETHING is going on. I brought this up to the jerk neuromuscular Dr who just wanted to get rid of me, and he said I was “over reading.” I’m like “um no I want to catch this early.”

I never planned to seek continued care from this Dr, but he has told everyone that the test was “normal” without this caveat (to his defense it is normal in a diagnostic sense), leading the Neuro team to be like “nothing more to do here” - nobody wanting to connect dots. I just had to call patient relations and fight to not get abandoned.

🤬

Tongue has been progressively deviating to the right, swollen, w ridging since I had a big flare of mystery illness in July 2025 that produced left trigeminal numbness/peripheral vision loss, lancinating pains, bilateral near-paralysis of ankles (1/5), severe vertigo and blood pressure swings, tongue sores, other symptoms too long to list, in that order (happened over 1.5 weeks, not all at once). Paralysis appeared when I tapered down 50mg to 40mg prednisone after I went to ED for the vision loss/pain. It reversed w Ativan and another 40mg dose. Took 3-4 weeks to recover enough to go to work.

Since then, chronic symptoms have been worse, and symptoms appearing w July flare have been chronically fluctuating now w/ triggers of stress/heat/exhaustion- trigeminal numbness, ankles tough to “wake up,” more intense/frequent paresthesia, chronic fatigue, dizzy episodes, feet burning/toes curling/cramping, and finally these tongue issues. Mouth is also dry.

Neuromuscular/neuroimmunology say I have no more testing to do because my MRIs/NCS/EMG/SFN biopsy were “normal” (the biopsy did show small axonal swellings). They have not suggested antibody testing.

Autoimmune panels have been normal except some early Sjögrens antibodies. Sjögrens lip biopsy and SSA/SSB are normal. I have new diagnoses of burning mouth syndrome and convergence insufficiency.

Ophthalmology said if not MS, my eye issues have to do with ‘sympathetic chain overactivity’

And meanwhile, I have a speech impediment and things are still progressing.

What gives?

Small axonal swellings

Progressive Deviated Tongue + Multisystem Symptoms