Good video. Message from this is those with POTS and suspicion of autoimmunity should strongly consider Sjogren's, because unless you're 60+ with horrific eye/mouth dryness your doctor probably won't. A few useful points: - Autonomic dysfunction & practically any other neuropathy can often precede classic Sjogren's sicca (dryness) symptoms, in fact sicca preceded other symptoms in only 11% of cases. - Onset usually 30s/40s/50s. - Wide range of suspected antibodies involved. Classic Sjogren's panel has very poor sensitivity, even lip biopsy only 73% sensitive. - MCAS a common complaint as per other POTS/autoimmune scenarios. - Dr Goodman feels those with both neuropathic and hyperadrenergic POTS are at higher suspicion of having Sjogren's The last point is very relevant to me. I already had a strong suspicion of Sjogren's as my mother is currently being investigated for it by lip biopsy, but this adds more weight...
I am poster child for this. Except no 'onset in 30s part', more like onset in 10s part . SS-A positive, 8/9 CellTrend positive, Anti-TPO, anti-TG Hashimoto, childhood PANDAS, tilt test showed POTS but i have to repeat it. Seems it is neuropathic + hypeadrenergic POTS because my BP also goes sky high on tilt (and normally is good) ... And SFN. response to MCAS treatment too. I am convinced I have ME too because of classical PEM and neurological 'attacks' of burning if i overuse parts of brain or body This should make me hopeful but for Sjogren's no freaking drug works either. Rituximab failed. HSCT is of questionable success. So... yah....