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Does bad reaction to epinepherine means not Masto but Carcinoid?? (Read 6413 times)
Sandi
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Re: Does bad reaction to epinepherine means not Masto but Carcinoid??
Reply #15 - 06/27/11 at 17:36:56
 
Kluesy,
Hello, forgive me if I repeat anyone, I come on often late in the evening when my brain and body are ugghhhhhh! But wanna throw an idea out that I don't believe has been covered. You may be allergic to the sulfites in the Epi not epinepherine itself. I believe it's in albuterol also but could be off on that. I've had some pretty severe reactions and chose not to epi because I really am pretty sure it will go more south when I try it. Some on here will say naaahhh won't happen. But I've sat in the DR's office and been told no way will you react and have severely. I know my body and sulfites are severe very severe for me.  So far knock on wood I haven't epi'd. However there were a few I should have went to the ER to get prednisone and the other things I do tolerate. My medication toleration is absolutely rediculous. I am stupid stupid sensitive. Foods, chemicals, drugs, drugs are just rediculous. The last surgery I survived we ruled out all pain medications. Nothing like recouperating from surgery and reacting severly to pain med after pain med. I so know what you mean about not having it in you to see another "flake" It is infuriating after awhile especially with a mast cell disorder/severe allergic condition. Even with a top doc you still are having to tweak and discover what your personal mast cell disorder triggers are! I think most of us went through the carcinoid testing. Mast cell disorders aren't on many doctors radar. Even allergists. My guess is that's the largest group of doctors that we are all disgusted/frustrated with.  Because they are the ones that should be treating us.  Dr Akin before Boston was in Michigan, I'm trying to remember where!!! Deb and others will remember, anyway maybe that's not horribly far? Travel is a real nightmare for me so right now I'm pretty much self treating with an MD in my court and on board sort of.... I also take a natural thyroid. Nature thyroid, it is still an RX I don't know what that dum docs issue was. I was hypothyroid all the way back to the 80's and literally tried every brand out there synthetic, etc and couldn't tolerate many. Violently throwing them up. So I ended up just not medicating my hypothyroid. It was awful, i'd try armor again and throw it up. Finally I did nothing for years and weight has been an issue even with a seriously controlled diet. Finally I gave another brand a go about two years ago! Yessss! Finally one I can take! I've been horribly sick for a long time and it has been a mix of alternative and modern medicine that has kept me alive. I couldn't survive without my antihistimines! Also wouldn't have survived without many homeopathic (react to plenty still) natural remedies. Again in that world and the medical world not one specialist ever suggested taking antihistimines!!! I was so anti drug for so long and so sick!!!! When I first came across mastocytosis I couldn't believe neither realm had suggested it, I was practically textbook with exception to the awesome tryptase test! So I began to take benadryl in the evenings and would wake up feeling better and then went my journey to getting a handle on this everchanging beast!!! So I'm here to encourage you to keep at it, we are all so different in what we can tolerate, and try try try to only see an expert since you've already been through the wringer!! If you can make it to where Dr Akin was previously, I'm sure he has plenty of Dr's that studied for years under him still there! Ok I believe it was University of Michigan but maybe someone can clarify. I'm sure there are specialists there that worked with him!!! I'm sorry what you are going through right now, however! You've come to a place with similar doctor stories , misery stories, and also a lot of laughs and smiles. So vent away my friend, and you will be amazed at the knowledge from everyone here!
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Joan
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Re: Does bad reaction to epinepherine means not Masto but Carcinoid??
Reply #16 - 06/28/11 at 07:29:04
 
Sandi might be right about people who trained under Dr. Akin, but be sure to ask for one of them if you make an appointment!
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Joan
 
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