Hi all,

This thread is an offshoot from one below where some posters here recently discussed how antihistamines seemed to help their PN symptoms. I also participate in a dysautonomia forum, where many members have MCAS. I never paid much attention. This is a newly-recognised disease and I had not heard of it.

Yet I thought of it in reference to a member here who wrote of his PN, hives, and GI problems....all typical if MCAS. I then did some more research (sorry I can't upload articles..I'm writing on my reader..Wikipedia is actually a good starting point). Mast cells are produced in our bone marrow and are deployed to fight infection. They can become inappropriately activated, and release histamines and other substances that can be neurotoxic.

Many people with MCAS have POTS or other cardiac dysautonomic symptoms, PN, GI problems, and allergic symptoms, including anaphylaxis. Light bulb moment: my dysautonomia and eventual PN were set off by an extreme reaction to antidepressant medication. I always assumed the meds were somehow neurotoxic (I had neurological symptoms for over a year), but no one could make sense of the fact they ultimately caused both anaphylaxis as well as a hypertensive crisis that nearly killed me. I didn't get it either....until now ...possibly.

Here it is over a year later....and I am basically bedbound with severe dysautonomia...my worst symptom is very labile blood pressure. This week I started a beta blocker (Propanalol) which really helped...but set off allergies. This is another sign of MCAS...very weird reactions to meds.

I just wish to put this out here. Testing is difficult...there are about five docs (primarily hematologists) who do this for a living in the U.S. I live in NYC...no one here! One, Anne Maitland, is no longer taking patients. I then wrote Lawrence Afrin in Minnesota and Cem Akin in Boston. Both had assistants write me back. Both have year-long waits, but each agreed to work with a physician here for testing. Nice guys. My PCP is game.

Treatment involves a variety of histamine blockers and a low-histamine diet (scary...all sorts of things verboten). But I'd do it in a heartbeat if warranted. I do want to be tested first...it's really restrictive...but easy to look up on line.

I'm wondering if anyone here has been diagnosed with MCAS.

I can tell, from the antihistamine thread, that some people here might wish to consider testing. It just would be great if I had an underlying disorder causing SFN with treatment that is not life-threatening!

Sylvie

If you don't mind, are you able to disclose the anti depressant medicine?

Hope you get some answers soon.

No problem. I was taking a high dose of Effexor (an SNRI) which became ineffective. Instead of weaning me off first, my doctor added a high dose of Paxil (SSRI). I was also taking Trazadone for sleep. I had Parkinsonism for about 14 months when I had the crisis. I thought it was a variant of serotonin syndrome. Then abrupt withdrawal. This was Thanksgiving 2014.

I was a mess, but recovering.....had to go on sick leave. Dysautonomia hit in March. PN began in May. Positive SFN 11/15. Positive POTS and neurocardiogenic syncope last month (I couldn't figure out why I've been bedbound...that's the reason!) As you can see, testing taking forever.

I'm still a mess.. I'm a professor, and was really grieving about what looks like a necessary early retirement. I'm moving into the "acceptance" mode of my grief stages!

Thanks for your good wishes!

Sylvie,

What is involved in the testing? Have you considered just trying the antihistamines to see if they work? Many conditions are actually diagnosed by trying treatments for them...ie., like inflammatory neuropathies are sometimes determined by seeing if a course of steroids work? It's not like there is a specific test for inflammatory neuropathy...and the short course of steroids can show immediately whether inflammation is a factor int he neuropathy.

Speaking of bedridden, what have you tried for your dysautonomia? I don't want to detract from the point on your thread (which I think is perfect based upon some members comments and symptoms). I have a long history of dysautonomia (19 years) and might be able to offer you some information to help you get out of bed.

I am one of the many here with strange allergies, but that is also common with any autoimmune disease, due to the direct tie between the immune system and allergies (IgG, IgA, Igm...& most importantly, IgE (for allergies). So I have an interest in where this topic goes and all the good input that will likely get posted.

There is a free-access PDF which discusses diagnostic criteria and possible treatments for MCAS here; http://www.jacionline.org/article/S0...11)00675-0/pdf.

Hi En Bloc,

Thank you so much for your interest....your posts are always so intelligent, informed and interesting......based on your history, I was wondering if you had been tested for MCAS.

Testing:...tryptase levels (sometimes normal with disorder); histamine, prostaglandins, and leukotrienes in an iced, 24-hour urine sample; sometimes a bone marrow sample.

Antihistamines:
I'm hesitant to try antihistamines because they tend to act antithetically and make me hyper ....yes Benadryl keeps me awake (although they do help my allergy symptoms). I would just like to know if I have MCAS before taking anything. I have so much trouble sleeping anyway (I'm sure you can relate).

Bed:
I am extremely uncomfortable standing and even sitting with my head unsupported. I do have a body worker/yoga teacher coming 3x/wk. She's great. I also push myself outside as much as possible. I never feel "normal." (I was very high-energy and athletic before all this). I thought it was simple fatigue....neuros concurred.

So I had my first tilt table test two weeks ago. My BP dropped from 149/90 to 80/60 before I was vertical. I began passing out and they stopped the test. I had no idea my BP is so labile.....this is why it is so hard to stand/walk. I also have POTS. I can't believe my neurologists were not on to this. (I found my own cardiologist...he thinks the cardio stuff is "severe," and found other heart issues as well.) I had a nuclear stress test last week and I'm waiting for results...I'll be going in Tuesday.

I would be very open to your suggestions and would love to confer....how do we PM on this site?

By the way, I had three panels of testing for autoimmune disease and nothing!

Again, thanks so much!

Sylvie

Thanks Kiwi!

I posted a number of things on this thread after Silvie mentioning MCAS. I did lots of research, basically reading all the literature I could find, including the short piece Kiwi provides here.

As I said on there, lots of useful links here (this woman is both an MD and has Celiac+MCAS): http://www.thepatientceliac.com/2014...drome-madness/

Including to this long piece bu Dr. Afrin, which is worth reading:

https://www.novapublishers.com/catal...ducts_id=42603


Sylvie,

Where did you call or write to? I would like to get my GP involved and see if Dr. Afrin is willing to work with her. I have no problem seeing the plausibility of this in my case too.

Thanks for posting this.

I have classic neurological based Sjogren's with ganglionopathy. The allergies I have are weird, but not wide spread and I don't get any hives or such. Just weird like being allergic to EVERY antibiotic in all the drug classes. I have also tested positive for allergies then tested negative for the same allergies. But these types of things are quite common with autoimmune disease due to the improper and erratic actions of the immune system. I don't really have any unexplained allergies or symptoms...everything (now) seems to fit in a neat little box. But of course it wasn't always like that and it took many years to understand the 'what & whys' of my condition.

That being said, I'm very interested in the MCAS and plan to discuss it with my rheumy/neuro at Hopkins this spring...after I've had a chance to educate myself a little, and that starts with some of your links and the discussion you (and DavidHC) began in the last few days. So I'm not ruling this out as a possibility or additional aspect of my condition.

As for the NMH (neurally mediated hypotension--from your tilt table) and the POTS. Although these two conditions can come by them self, they are most commonly paired together. Actually, the NMH 'causes' the POTS in many cases from the low BP causing the heart rate to NATURALLY increase during these positional changes. When the brain detects the drop in BP, it automatically increases the heart rate in order to get blood to the brain. It's called a compensatory reaction. So these two conditions go hand in hand.

The complete autonomic testing takes a while but it sounds as if you have a good idea that your autonomic system is failing to perform as it should. Of course, this will leave you unable to stand for any length of time...even sitting up can be difficult. There are many other aspects of dysautonomia...that effect other systems.

I will sit down in the next couple days and write out some of the things I have done to help and medications commonly used to treat dysautonomia. I will also discuss some of the other testing you may need and what to expect from it. I'll PM this info later in the weekend. There is a link in the top right corner of each page that says 'private messages' (just underneath your 'welcome ...user name'). When I PM you, this will become bold and show an unread message...just follow the links to read it. You can reply directly from my message or PM any time by right-clicking on my user name from any place it appears on the forum or thread. The drop down on this right-click action will give an option to PM.

Like I said, I'd rather do it this way than try to discuss two separate topics within the same thread. I don't want to detract from the MCAS topic in any way.

This is interesting. Note the case that begins on page 149:

https://www.google.ca/url?sa=t&rct=j...PsZzUA&cad=rja