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Webinar: Sjogren Syndrome and the Autonomic Nervous System: When, How, What Now?

Discussion in 'Neurological diseases' started by Andy, May 5, 2018.

  1. Andy

    Andy Committee Member

    Hampshire, UK
    Click the "Watch on Vimeo" button to view.
    Hutan, Inara, cyclamen and 4 others like this.
  2. Ryan31337

    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...
  3. Pibee

    Pibee Established Member (Voting Rights)

    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.

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