Lisa
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Thank you, Doctor, for your wonderful answers!! I´m certain that I´m not the only one who gained understanding with your replies. I especially appreciate your last one showing that hopefully the Allergy/Immunology community will be catching up soon! Those of us who have MCAS diagnoses look to Dr. Castells as our highest authority for she's been the major promoter of this diagnosis for quite some time. Some of us have not had an easy time accepting the NIH's stand on not accepting this diagnosis for in their stand, we end up getting rejected either by the NIH itself or by doctors who are not so broadminded. We've not had an easy time understanding the NIH's stand, but when you explain it the way you did, this helps a lot! Thank you!!
Thank you also for your reply to my question. You put it into much better words than I was able to that day!!
Now, do you mind if I pick your brain with another one?
Doctor, I've got a diagnosis of MCAS, but I'm suspected for MMAS. I live in Brazil and although I'm American by birth, I'm a missionary and haven't the funding to return to the States for testing, etc. I must live within my limitations and Brazil's limitations. So for now, it's a suspicion, a very strong suspicion. Everything about my case that the neoplasm exists, we've just been unable to find it. My case is also autoimmune and it has added its own flavor to my case! (to say it mildly!)
My question is - I've been without problems of reacting to smells for the past 4 years since my masto came out of hiding following surgery. I had no problems with smells at all, however, last year things suddenly changed! I had a bad reaction to some pretty awful perfume and since then I've triggered to perfume 4 more times and in the past 3 weeks I had a reaction to strong car exhaust and last week to the silicone that the guys at the car wash put on the inside of our car when they cleaned it. It's not the first time my husband had the car professionally cleaned, but what I don't understand is why, in this past year, am I suddenly sensitive to smells when for the 4 years prior I didn't have a single problem with odors!!
How is it that we can change like that all of a sudden? I've heard of others go from having very few issues with food to becoming so reactive that they are down to a diet of only rice and chicken or only a few items. I'm a shocker and even though these situations are frightening, even this kind of thing we humans find we can adapt ourselves to, but it's the unknown nature of this disease which is so hard to adapt to. This is one reason why I like to study about it for in gaining more understanding, I'm able to deal with my fears and put them into the right perspective. But how can I defend myself when I can't even figure out what happened to change this and is it going to get worse?
Can you say why these changes happen, or what can make us suddenly allergic to perfumes and products or to foods when we weren't reacting to them before hand? Is there anything we can do about it?
Thank you!
Lisa
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