Cindi,
My doc. told me since I have Masto I am allergic to the world...however all my allergy test come back
negitive. I can eat something and go into anaphlaxis and be tested for it and it will be negitive!! So I think you should go by what you know and not what the allergy test says.
Many people with mast cell issues do not test positve for allergies!!
There is a comprehensive list of safe drugs and unsafte drugs for people with mast cell problems. This list is on the Mastocytosis society forum
www.tmsforacure.org/ under emergency catagory.
I don't blame you for waiting on the knee, It is best to figure out what is going on with your body before surgery.
I do believe with the right doc you will figure this whole thing out. It took me almost a year and a half to start to figure it out and get stablized.
Remember most doctors are not familure with Mast cell issues or mastocytosis. I am lucky ...I went to an allergy/immunologist that has some knowledge of it, he has put me on mast cell stablizers and they have made a world of difference. I have not seen the specialist in Boston, however if my doc didn't know about mast cells, it would be well worth the trip!
Good luck, the frustration is part of this whole thing, but remember the stress can make you worse, so take a deep breath and take one day at a time.
Did he put you on any other meds?
You might want to look up what we take, and what some doc. recommend.
Im not a doc and not recommending you take what I take but want to tell you my list because I think you are very undermedicated for a mast cell issue!
Ketotifen- mast cell stablizer x2 a day
chromolyn sodium- mast cell stablizer X4 a day
singulair (dropped this a few weeks ago)
zyrtec-antihistamine
(2)zantack x2 a day-antihistamine
clairtin-antihistamine
atarax-super antihistamine
This is a work in process and has taken about 4 months to get stable and when I cheat and eat things I shouldn't my "bucket" overflows.
hang in there, we know how you feel!
Pam