Originally Posted by SylvieM

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

Originally Posted by baba222

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

Hope you get some answers soon.

Originally Posted by kiwi33

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.

Originally Posted by DavidHC

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.

Originally Posted by SylvieM

Hi David,


Here are some contacts for you: please look up full addresses, for I don't have them ..sorry.

The two I contacted:

Lawrence Afrin
University of Minnesota -Hematology
Afrinl@umm.edu
His assistant is Georgio Walberg
612-625-9604

I wrote Afrin and Walberg wrote me back--stated Afrin read my letter...nice.



Cem Akin
Brigham and Women's Hospital, Boston
617-278-0300
(I called and assistant returned call)

Other docs:

Maria C. Castells
Brigham and Womens
Colleague of Akin

Theoharis Theoharides
Also writes with the two above
716-636-6898

And by the way, you know the Afrin article you posted up is on Mastocytosis, a far more serious disorder than MCAS?...I just skimmed it, but will check out page 149. You know you inspired my post...I really hope MCAS is the answer for you. I also had to smile at your sense of ageism (although I get it...how can a big, healthy man complain about obscure, subjective symptoms? ) Yet it ain't easy being a 60-year-old woman who flings around medical jargon. (I'm still working on my patient persona.) I'm so lucky I found a couple of smart, open doctors. My cardiologist is a peach. Yet, I'm still hunting for the elusive smart and empathetic neurologist!

En Bloc,

Speaking of smart....I again have to thank you. Is your neuro/rheumy Julius Birmbaum at Hopkins' Sjogrens center? My rheumatologist suggested I go there, and I know another patient of his from another forum (perhaps it's you....forum aliases are confounding!). My sister is in Baltimore, so it could be an easy stay for me. I'm eager to see if he'll test you ...perhaps I should see him?
.
...I look forward to your message (no rush!).

Sylvie

Originally Posted by SylvieM

Hi David,


Here are some contacts for you: please look up full addresses, for I don't have them ..sorry.

The two I contacted:

Lawrence Afrin
University of Minnesota -Hematology
Afrinl@umm.edu
His assistant is Georgio Walberg
612-625-9604

I wrote Afrin and Walberg wrote me back--stated Afrin read my letter...nice.

Cem Akin
Brigham and Women's Hospital, Boston
617-278-0300
(I called and assistant returned call)

Other docs:

Maria C. Castells
Brigham and Womens
Colleague of Akin

Theoharis Theoharides
Also writes with the two above
716-636-6898

And by the way, you know the Afrin article you posted up is on Mastocytosis, a far more serious disorder than MCAS?...I just skimmed it, but will check out page 149. You know you inspired my post...I really hope MCAS is the answer for you. I also had to smile at your sense of ageism (although I get it...how can a big, healthy man complain about obscure, subjective symptoms? ) Yet it ain't easy being a 60-year-old woman who flings around medical jargon. (I'm still working on my patient persona.) I'm so lucky I found a couple of smart, open doctors. My cardiologist is a peach. Yet, I'm still hunting for the elusive smart and empathetic neurologist!

En Bloc,

Speaking of smart....I again have to thank you. Is your neuro/rheumy Julius Birmbaum at Hopkins' Sjogrens center? My rheumatologist suggested I go there, and I know another patient of his from another forum (perhaps it's you....forum aliases are confounding!). My sister is in Baltimore, so it could be an easy stay for me. I'm eager to see if he'll test you ...perhaps I should see him?
.
...I look forward to your message (no rush!).

Sylvie

Originally Posted by en bloc

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.