Ive Been Gone A While But Finally Got Diagnosed

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Regular Member

Date Joined Jun 2013
Total Posts : 21
   Posted 5/1/2016 2:17 AM (GMT -6)   
Hi all....i used to be a regular on healingwell a long time ago but had so much going on in my life that i just fell of of the radar. However...in the time ive been gone i finally got diagnosed. I have struggled for the past 30 yrs with increasing inabity to take any and all meds. I had drs tell me i was crazy....theres no possible way i could have a problem witb all meds....i was MAKING myself react with my mind.....you name it. My reactions got worse and worse until i was finally dying from a b12 deficiency. Yeah...thats right....i was dying from it. They tried to give me b12 shots but the initial shot made my mouth tongue lips and throat swell (exactly what every med did to me. FINALLY FINALLY FINALLY...i saw Dr. Marianna Castells at brigham young in boston mass. who ran a ton of dna and genetic testing and found that i have a very rare illness called nonclonal mast cell activation syndrome. Its in the mastocytosis family. They immediately startex me on ketotifen..monteljkast...and cromolyn. It took over 2 yrs for me to be able to take those 3 meds. BUT...i am now able to shower withojt my throat swelling....i can go ojt in the sun for a while....i can drink drinks with b12 added...i can eat meat.....AND i actually was able to take a 10 day round of antibiotics! I was hospitalized twice but i got through a 10 day round of a low dose antibiotic therapy! I will never NOT react to meds and many otber things but at least i have some options now. I guess i said all of this just to say......dont give up!!!! Good night everyone.

Veteran Member

Date Joined Oct 2009
Total Posts : 5022
   Posted 5/3/2016 8:30 PM (GMT -6)   
I'm glad you got a diagnosis, but sad it was a difficult one.. At least there have been other posts on this, so you have friends here.
Check out the recent posts and look at the search box.
Best wishes.
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