News from Dysautonomia International

Esther12 said:
Is there any basic/widely recognised test that they could get on the NHS? Should I advise them to try to find a specialist?
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I don't know what tests are permitted by the NHS (and @Justy will be able to advise on that part) but some standard tests done by my main doc and MCAS doc in the US are: histamine, tryptase, prostaglandins, and chromogranin A. Hope this helps.
 
Esther12 said:
I was just asked about MCAS by someone in the UK with EDS/PoTS, and how it is best to start any investigation of possible mast cell issues. Is there any basic/widely recognised test that they could get on the NHS? Should I advise them to try to find a specialist?
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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
 
Ryan31337 said:
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 know a good London/Norwich based consultant dermatologist who is well versed in Masto/MCAS, he who 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.
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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.
 
Esther12 said:
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.
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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...
 
Esther12 said:
I was just asked about MCAS by someone in the UK with EDS/PoTS, and how it is best to start any investigation of possible mast cell issues. Is there any basic/widely recognised test that they could get on the NHS? Should I advise them to try to find a specialist?



That doesn't sound good!

I found this: http://www.potsuk.org/mcas

I'm not really sure what 2 means, or how it would be tested.
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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.
 
Ryan31337 said:
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.
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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.
 
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.
 
Not watched this but some members are finding this sort of thing useful, so hopefully this one is as well.
Dysautonomia International was pleased to collaborate with The Mastocytosis Society to host one of our monthly webinars on the complex relationship between mast cells and the autonomic nervous system.

We were joined by immunologists Dr. Andrew White, from the Scripps Clinic in southern California, and Dr. Jonathan Bernstein, from the University of Cinncinatti, for an engaging discussion on the topic. Thanks to everyone who participated!
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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...
 
Ryan31337 said:
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...
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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.
 
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.
 
Mayo Clinic gastroenterologist Dr. Jean Fox presented on GI dysmotility in POTS and other forms of dysautonomia, and recent autoimmune gastroparesis research, during the Dysautonomia International 2017 Conference. This lecture was presented to a physician audience, but science-savvy patients who want to learn more about GI motility issues in dysautonomia will appreciate it too.
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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.
 
Samuel said:
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.
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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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