Riverwn
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OMG Donna, Im so sorry that uninformed medical caregivers would not take one minute to educate themselves before giving you advice that could kill you!! Losing conciousness and starting to breath afterwards is ONLY with an anxiety attack--NOT WITH SHOCK, you will die! PLEASE ignore this ignorant advice!
The EXPERT Drs on Mast Cell diseases (Drs Castells, Escribano, Akin, Afrin and a few more) give a few scenarios where you should take your epi. They are; trouble breathing,(or) a feeling you are going to lose conciousness, (or)high BP during mast cell reaction (where people have POTS), (or) a feeling of impending doom during a severe mast cell reaction,(or) sudden swelling around the throat/mouth areas and ANY SIGN that you are going into shock. Medical staff are not really educated enough as to the new definition of shock and the fact that there are different kinds of shock, not just one cookie cutter type.
Donna and Kelly, Please---start keeping an ER book, just for you with some info from TMS by Drs for other Drs to read. Also, I want you to ask your Dr for a letter printed out from him and his office, that says what he wants them to do, how to treat you when you are having a mast cell reaction and shock.
Ive never heard of SA term, I dont know what that is.
You might look to the MD Anderson hospital right there in Houstan with you. They do A LOT of research on Masto and their Drs know mast cell problems very well.i would contact Srdan Verstovsek, MD, PhD there. He is also on TMS board of expert Drs. Good luck to you both!! Hugs, Ramona
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