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Mastocytosis


Jacquie802
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Hi,

My endo is suspecting that I have Mastocytosis. We are waiting for tests to come back. Who here has been diagnosed with Mastocytosis?? Have you had to make any changes??

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Are you sure they thing Mastocytosis and not Mast Cell Activation? There's a huge difference between the two, even though they sound like the same thing.

I only know a little about Mast Cell Activation because my doctors thought I had it for a long time, but my tests came back negative. If you want to know more about it, let me know.

I hope in either case, you tests come back negative! Although MCA is fairly easily treated.

-Lauren

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No they're definitely different. Systemic mastocytosis is a lot more serious. I have a friend who has it. But most of us with MCAD are controlled well enough with a light antihistamine.

I hope your tests come out negative!

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Hi,

I'm pretty sure, almost positive my doc says that she thinks it is mastocytosis. What is the difference between that and MCAD???

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I'll give you my understanding of the two, but you may want to do some research on your own to double-check:

Mastocytosis, as Lucky Charm said, is more rare and more serious than Mast Cell Activation. It can often be associated with anaphylaxis, and severe cutaneous (skin) allergic reactions. In the case of Mastocytosis, there is no allegin causing the attacks, they occur at random and can be life-threatening in bad cases. A nurse I talked to at Vanderbilt said she'd met people with bad Mastocytosis who have anaphylactic reactions daily and have to have several epi-pens on hand in order to function...of course, when you're that sick the definition of "function" isn't much. Mastocytosis is also assoctiated with Mast Cell Leukemia in some cases, but there are many different kinds of Mastocytosis, some are less serious than others, but all are extrememly rare.

Mast Cell Activation occurs when the body randomly flushes itself with Mast Cells. It presents as "flushing" episodes where BP and HR go up and the face and body flush for a short period of time. Shaking and sweating are also commonly seen druing these episodes. Vanderbilt did a study a few years ago and found that MCA is sometimes seen in conjunction with POTS for reasons they don't understand. Many people with POTS have flushing episodes, and while some with flushing don't have MCA, many test positive for it. It's treated with a type 2 antihistamine (such as Allegra).

I get the flushing episodes that are associated with MCA. Although I get them so rarely they aren't much of an issue. I've been tested for MCA, and tested negative, however, I've never been tested during a flushing episode, which is the optimum time to be tested. I wouldn't be suprised if I had a mild case of MCA...but like I said, the episodes are so rare that I don't really worry about them.

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