Video lecture: Autoimmunity & Mast Cell Activation in Dysautonomia

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

 

Thanks Gingergrrl. Will pass it on.

 

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.

 

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...

 

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.

 

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.

 

@Gingergrrl, Dr Schofield is now at IMMUNOe Health Centers in Centennial CO. http://immunoehealth.com/about-us/providers/

 

Wow, @Kellyj80503 Thank you so much for finding this info and alerting me! I have not posted on S4ME for several months due to family emergency (my mom was very ill and passed away last week). I will post about that in another thread to not take this one off track but wanted you guys from S4ME (who do not post on the other board) to know why I have not been here and was not able to keep up with two boards as much as I'd wanted to.

I had several e-mails back and forth with Dr. Schofield (several few months ago) but I did not know specifically where she was practicing now. I live in So. California although one of my best friends from high school lives in Denver, CO (where Dr. Schofield practices now). Dr. Schofield told me that she is not accepting new patients at this time and has a 2.5 year waiting list! But I do not know if this has changed? She had said she hoped to get either a PA or a nurse practitioner (I cannot remember which one) to help her which might reduce the time on the waiting list.

I copied her Bio from the website and the highlighting is my own:

What really strikes me as unique about Dr. Schofield is that she is one of the few doctors (on the planet!) who views "Autoimmune Dysautonomia" (which is my core problem) as an emerging field! Although her main interest is anti-phosopholipid syndrome (which I do not have) she is also very interested in the autoantibodies that I do have (paraneoplastic, anti-muscarinic, beta-adrenergic, etc) and she suspects a subgroup of people with Dysautonomia have these types of auto-abs.

When more common Dysautonomia treatments do not work, or only lead to minimal improvement, she understands that POTS and Dysautonomia can have an autoimmune cause (in some patients) and she tests for autoantibodies and uses high-dose IVIG and other treatments. I have never met her but I shared my situation and treatment plan (from my own doctors) and she felt that I was on the right track. She said that IVIG can often take two years to have the full effect, and for me it will be two years in July. I am continuing to benefit from it (even though it is getting harder to tolerate the side effects).

I would love to see her some day, and for my main doctor to consult with her about my case. I wish she was in my state (vs. Colorado!) and that her waiting list was not 2-3 years long although I completely understand why it is! There is really no one else like her out there and so many patients who need her help and expertise.

Thank you again, Kelly, for tagging me or I never would have seen this.