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.

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.

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

YES, my doctor is Julius Birnbaum. I have seen him for the last 8+ years (before he was even at the Sjogren's Clinic)? He is, by far, the best in the nation for neurological manifestations of Sjogren's (or other autoimmune disease). He is the only one in the entire country to be both a rheumy and neuro. If you can get in to see him, then by all means, go for it.

Have you been on the Sjogren's World forum? I have spoken of Dr. Birnbaum many times on that forum...and here. So you may know me from there...my user name there is my real name, Anita.

Hi Sylvie,

Thank you for this information. I may have found a local specialist who knows Afrin too, so that's good. I'll definitely update this thread when/if I proceed. In all honesty, I want to pursue this path because I want to know the etiology of it all, it's who I am, not because I think it will help cure or heal me. My guess at this point is that I had some sort of infection, whether bacterial, fungal, etc. via the gut that became systematic eventually and has caused autoimmunity. I have no problem believing all sorts of things may have gone wrong in my body and to say that one intermediary mechanism of action was my mast cells going off the rails, so to speak. I want to know and if I can figure it out, I will. Diet is the key here and it is what has made the immense difference for me. I will continue to heal my gut and go from there. But I wish to look into this among other things, and though I may have inspired you to post about MCAS, you inspired or motivated me to look into this. It makes sense. Thanks again.

Also, the article I posted is actually Mastocytosis, well per se, it's about systematic mast cell diseases, and deals quite extensively with MCAS too. One thing that may have to be done for anyone who has issues indicating MCAS, especially after preliminary blood tests and depending on what they indicate, is testing for Mastocytosis. Regardless, if you read on, the meeting concerns primarily MCAS.

I would say it's as bad as it gets for women, given sexism, and older women due to sexism and ageism, for sure. But I can't tell you the number of times physicians will not look into things or take me seriously despite my complaints and when I've already been diagnoses with SFN and other problems with unknown etiology, because I'm young and I "look good", whatever the hell that means. But I can hold my own, and no doubt it's definitely easier for a young male, who doesn't have to deal with sexism and ageism.

Thanks again for your kind words and the information. And good luck on finding competent and empathetic physicians. They exist here and there...

Dear David,

Thank you so much for your letter....Lovely and supportive in every way.

I'm sure your great energy and drive will lead to a diagnosis and effective treatment for you. Meanwhile, I and everyone here will continue to learn much from your voyage!
Now I'll read the article you posted for me.

Again, thanks so much.

S

Thank you, Sylvie. You're too kind. I appreciate the kind words and encouragement. I hope you're right, and I'll do what I can on my end. In the meantime, I've found a real expert in the field and will be referred to him in the next few weeks. It may be months before I see him, but he is an expert in allergy and immunology, with MD and PhD, and diagnoses MCAS too. Let's see what happens. I'll also write Dr. Afrin in the meantime.

Let me know what you think, once you've read it. The case I referred you too - and I recommend it for anyone interested - is one where one of the symptoms is PN, and one other, extremely bizarre symptom. It's fascinating, if nothing else.

Be well!

David,

I think this really may have an impact for you based upon some of your specific symptoms and reactions.

Autoimmune disorders are typically triggered by something and infections are at the top of the list. They don't have to be in the gut (mine was upper respiratory infection, same as many others I've talked to with Sjogren's), but it really doesn't make a difference 'where' it took place. It's the action in the immune system triggered by the infection that matters.

En Bloc,

Thanks for the encouragement, which is what it effectively is. I agree, obviously. How can it not be? It's already clear that it has a major role in all this, to what extent and precisely how, I can't say, no one can at this point. But that 'infection' is precisely how autoimmunity so often, perhaps if not always, begins is quite telling and worth remembering.

If nothing else, I'll solve or work to heal/improve my gut problems, and that alone is worth it. No one can truly be healthy without a healthy gut, and that's worth working toward.

Thanks again