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Video lecture: Autoimmunity & Mast Cell Activation in Dysautonomia

Discussion in 'Health News and Research unrelated to ME/CFS' started by Andy, Nov 23, 2017.

  1. Ryan31337

    Ryan31337 Established Member (Voting Rights)

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    Hi @Esther12,

    Tryptase can be done fairly routinely on NHS I believe. Unfortunately, like most of the other MCAS tests, it's reliant on a sample being taken at the time of a reaction and even then is not that reliable - many MCAS patients won't show abnormal levels.

    N-Methyl Histamine can be done fairly cheaply privately. PGD2 costs a fortune (chilled 24hr urine collection shipped to US). There was some talk of a specialist UK hospital lab starting to do these but I have no idea who has access to that - think it might've been Southampton or Portsmouth.

    I saw a good London/Norwich based consultant dermatologist who is well versed in Masto/MCAS, he could organise testing privately. Like other sensible docs he doesn't require positive test results before treatment though, he'll prescribe meds without testing and consider the response a more important indicator. PM if you'd like his details.

    There are a couple of other well regarded mast cell literate doctors that might be more suitable if primary issues are mast cell related bladder or GI problems.

    Ryan
     
  2. Esther12

    Esther12 Senior Member (Voting Rights)

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    Thanks Gingergrrl. Will pass it on.
     
    Last edited: Dec 4, 2017
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  3. Esther12

    Esther12 Senior Member (Voting Rights)

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    Thanks Ryan. Sounds like the sort of thing where we don't yet have great testing (which might explain why I was having trouble finding details on what tests were needed), so presumably there's also a problem that people might end up with inappropriate treatment. I don't really know anything about this stuff, but had hoped the science might be further ahead of where it seems to be right now.
     
    Justy likes this.
  4. Ryan31337

    Ryan31337 Established Member (Voting Rights)

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    Unfortunately not.

    The good news is that in some cases you can throw some quite safe (some even OTC) meds at it and usually see some improvement.

    It's a bit more problematic if it's got to the point where you can't tolerate those, but in theory that's where you'd get hospital driven care, steroids etc. with the aim to get you stable enough to tolerate the basic stuff. But that of course involves finding docs that have a clue...
     
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  5. Justy

    Justy Senior Member (Voting Rights)

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    There is no definitive test for MCAS - some have it with no increased levels. Testing is not reliable unless the lab really knows what they are doing with them. I would highly recommend a visit to one of the few private MCAS specialists in the UK. A full list can be found at Mast cell activation discussion group (UK only) Facebook group - which is very knowledgeable and small.

    If no Facebook, then message me and ill give you the name and address of mine.
     
  6. Justy

    Justy Senior Member (Voting Rights)

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    Sorry, had a little chuckle at this one! Im really struggling to eat, dont tolerate a lot of meds, antihistamines not even touching the itching anymore. No help from NHS at all. Steroids no tolerated. Really ill with lung inflammation during flu few weeks ago and looked at askance by the practitioner that came out to see me at home.
     
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  7. Esther12

    Esther12 Senior Member (Voting Rights)

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    I was hoping for a nice simple sub-group that could be easily and objectively identified and then treated, but this sounds like the sort of thing where legitimate and dodgy medicine could end up being a bit mixed up and difficult to distinguish. Thanks for all the tips, I'll pass them on.
     
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