Quote:
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. |
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