Progressive Deviated Tongue + Multisystem Symptoms
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?