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Webinar: Sjogren Syndrome and the Autonomic Nervous System: When, How, What Now?
- Thread starter Andy
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- dysautonomia sjogrens
Ryan31337
Senior Member (Voting Rights)
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...
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....
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....