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

Discussion in 'Neurological: Multiple Sclerosis' started by Andy, May 5, 2018.

  1. Andy

    Andy Committee Member & Outreach

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    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)

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    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)

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    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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