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Webinar: Misbehaving Mast Cells in POTS and Other Forms of Dysautonomia

Discussion in ''Conditions related to ME/CFS' news and research' started by Andy, Dec 13, 2017.

  1. Andy

    Andy Committee Member

    Hampshire, UK
    Not watched this but some members are finding this sort of thing useful, so hopefully this one is as well.
    Samuel, Mij, ScottTriGuy and 3 others like this.
  2. Ryan31337

    Ryan31337 Senior Member (Voting Rights)

    Interesting to briefly hear their thoughts on sub-types of MCAS at 19:40.

    Having spent some time on MCAS patient groups its quite apparent that there is a severe and recurrent anaphylaxis group that lead otherwise normal lives between reactions, as well as a patient group that is more moderately affected by the same triggers but suffer 24/7 with dysautonomia too (my case).

    I assumed the non-ana group aligned more to a concept of plain 'histamine intolerance', driven perhaps by enzyme deficiencies and/or excess histamine production from SIBO or the like. In this case its more easily controlled as exogenous histamine sources can be limited and run-away endogenous mast cell mediator production isn't a factor as it is in the ana group.

    But learning about these potential nerve-mast cell interactions suggests its ever more complex...
    Gingergrrl, Sasha, zzz and 2 others like this.
  3. Justy

    Justy Senior Member (Voting Rights)

    I havent watched it yet, but your thoughts are interesting. I think it certainly is more complex. In my case i have only ever had an atypical ANA three times, am not unaffected in between, in fact each episode has taken at least 6 months to recover from. Until this summer my only big reacions had been to drugs, now its food as well. My MCAS is not easy to control and keeps stepping up in severity. I presume i have some sort of Dysautonomia that is undiagnosed.

    I always quite liked the leaker v shocker analogy, but some of us are actually a little bit of both.
    Gingergrrl and Ryan31337 like this.
  4. Ryan31337

    Ryan31337 Senior Member (Voting Rights)

    I'd be interested to know the type of onset experienced by the otherwise relatively healthy 'idiopathic anaphylaxis' group.

    Would seem neat and tidy if they were usually acute onset vs people like us that gradually step up as our related illnesses trigger more and more.
    Sidney, Bluesky, Inara and 1 other person like this.
  5. Samuel

    Samuel Senior Member (Voting Rights)

    i got partway through. apart from being mentioned on the mcad slide, was there anything mentioned about angioedema? i have c1-inh normal but 4x antihistamines is either insufficiently effective or not effective.
    Bluesky likes this.
  6. Bluesky

    Bluesky Established Member (Voting Rights)

    well said. we must always have those to ill to be online at all or not at all in our minds.

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