well there are times that we just want to punch the doctor in the nose and scream...I am sick...
but one of the biggest problems with us masto folks is...we do not have the same symptons..all of us are different.. a ton of people have alike symptons ...so they all have the measles..so when they see us...you can eat pizza..I cannot...I cannot tolerate smells but you can...see what I mean..most of us have something different...maybe if  the doctor takes the time he might find something alike..but it is hard...and since doctors limit time with each patient ...usually..and until the medical schools teach doctors that there is a disease called mastocytosis..it is going to be hard..
I am so lucky...my doctor is just a GP but she never rushs me ..we talk until we are able to figure out what to do next...and she listens..
be tough it is your life you are talking about
redbird

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

Thanks, Ramona!

When I received that advice, I obviously ignored it and informed my GP. He told me that I was to disregard ANYTHING that doctor said. I actually just went to my GP today since I am having flare ups lately (chest getting red, chest pains from it tightening, and the feeling of my throat swelling - but not to the point that I can't breathe) and he has signed off on my medical book (thanks for that advice also!) and added two new meds for me to start on until I can get in to see a specialist. Singulair and hydroxi-something.....haven't picked it up from the pharmacy yet, so I can't remember the name. I plan on talking with my pharmicist as well, since there are so many names for some drugs and I don't want to take the wrong stuff. Just add them to my list of can't haves!!! (I believe I am up to 30 something drugs that have triggered some sort of reaction).

I just want to let everyone know how much I appreciate this forum. Being diagnosed with something that no one I know has every heard of, I really felt alone....dismally alone. But then I found this group, and the wealth of knowledge I have gained, not from doctors, but from the people here - has probably saved my life. I have been living in denial since my diagnosis, and when I started feeling bad a few weeks ago, I decided to log on here and read. I read so many posts and found that there were things that I was doing to myself to bring the attacks on. Kowing now that I can be taken seriously by the medical community (albeit not the entire medical community), but someone who doesn't think I'm crazy or faking it. I'm trying to come to terms with this disease (and yes, to me it's not a disorder, but a disease of my body) and knowing that I have a place to turn and ask questions, or cry about my problems, and find answers - that to me is a miracle. It is a miracle I found this group and a miracle that I have found some kinship in the people here.

Thank you to each one of you that contributes to this forum. You may not realize it, but someone needs to read your story!

Donna