Mast Cell Disorders Forum - classification Mastocytosis new

peter Mentor Offline I Love YaBB 2! Posts: 294	classification Mastocytosis new 06/19/16 at 11:15:30 https://www.joomag.com/magazine/ash-clinical-news-june-2016/0065459001464010704?...
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peter Mentor Offline I Love YaBB 2! Posts: 294	Re: classification Mastocytosis new Reply #1 - 06/19/16 at 11:19:39 can anyone explain the what i have
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Joan

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Re: classification Mastocytosis new
Reply #2 - 06/19/16 at 16:26:26

Hi Peter,

I suppose it depends on what your BMB showed, if you've had one, and what your tryptase level and other testing showed, as well as any other genetic information. According to this article, Mastocytosis is now it's own category with sub-categories to more specifically identify what is happening in the body. Ultimately, the name doesn't matter, it's how you feel and how it affects your life.

From what you've posted in the past, your case is not clear cut . It sounded as though you were diagnosed and then in-diagnosed. What do you thinks going on?

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Joan

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peter Mentor Offline I Love YaBB 2! Posts: 294	Re: classification Mastocytosis new Reply #3 - 06/19/16 at 17:11:05 Hi joan no my case is all over the place in-out maybe in agan but iv been offered a new tretment but i dont know what its for so the name is dose matter i have to tell my famly soumthing or do i say its for a mutation that thay carnt find anymoore What do you thinks going on ?
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peter Mentor Offline I Love YaBB 2! Posts: 294	Re: classification Mastocytosis new Reply #4 - 06/20/16 at 10:34:23 well i can teii them i dont have blood cancer any more and doc sead its not leukemia i could arsk google but it lies is it called immune disease joan
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Joan FORUM ADVISOR Offline Posts: 1502 Colorado	Re: classification Mastocytosis new Reply #5 - 06/21/16 at 18:57:59 I don't know enough about your testing to guess what it is. What does the doctor call it?
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peter Mentor Offline I Love YaBB 2! Posts: 294	Re: classification Mastocytosis new Reply #6 - 06/22/16 at 19:01:40 SM
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Joan FORUM ADVISOR Offline Posts: 1502 Colorado	Re: classification Mastocytosis new Reply #7 - 07/02/16 at 18:37:48 Dr. Gotlib at Stanford has called it a myeloproliferative disease, but I believe that changes in that designation have been proposed or approved for ISM. I will have to look for the article where I saw that. If I find it, I'll post it. All that said, I would also cause it an immune disorder, but not auto-immune.
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peter Mentor Offline I Love YaBB 2! Posts: 294	Re: classification Mastocytosis new Reply #8 - 07/06/16 at 14:09:57 just got back from doc No Everdence of active Mastocytosis tryptase 22 Luck or Miracle number [ 4 ] truth is not affected by Time
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Joan FORUM ADVISOR Offline Posts: 1502 Colorado	Re: classification Mastocytosis new Reply #9 - 07/09/16 at 20:26:33 Good! Hope you're not having symptoms either.
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peter Mentor Offline I Love YaBB 2! Posts: 294	Re: classification Mastocytosis new Reply #10 - 07/10/16 at 20:16:41 i am hypersensitiv joan i dont know if its symptoms or hypersensitivity bot been put back on Zometa for whatever as it worked larst time now with a bone specialist and he is a good person the 24\7 Vibrating body is getting worse but ha all good
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peter Mentor Offline I Love YaBB 2! Posts: 294	Re: classification Mastocytosis new Reply #11 - 07/13/16 at 21:09:18 Maybe thay should ad a mast cell [ melanoma ] to the masto list
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Joan FORUM ADVISOR Offline Posts: 1502 Colorado	Re: classification Mastocytosis new Reply #12 - 07/14/16 at 21:04:03 What is it?
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peter Mentor Offline I Love YaBB 2! Posts: 294	Re: classification Mastocytosis new Reply #13 - 07/16/16 at 11:02:37 it is what ever zometa works on to bring the tryptase down from 65 to 22 i would like to know why it went up from 31 to 65 in the first place maybe i could send my test results over to your exsperts non in au
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peter Mentor Offline I Love YaBB 2! Posts: 294	Re: classification Mastocytosis new Reply #14 - 07/24/16 at 11:15:14 http://bloodref.com/myeloid/mpd/systemic-mastocytosis-diagnosis
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