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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> General Mast Cell Disorder Discussion >> classification Mastocytosis new http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1466374530 Message started by peter on 06/19/16 at 11:15:30

Title: classification Mastocytosis new
Post by peter on 06/19/16 at 11:15:30

https://www.joomag.com/magazine/ash-clinical-news-june-2016/0065459001464010704?page=22

Title: Re: classification Mastocytosis new
Post by peter on 06/19/16 at 11:19:39

can anyone explain the what i have

Title: Re: classification Mastocytosis new
Post by Joan on 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?

Title: Re: classification Mastocytosis new
Post by peter on 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 ?

Title: Re: classification Mastocytosis new
Post by peter on 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

Title: Re: classification Mastocytosis new
Post by Joan on 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?

Title: Re: classification Mastocytosis new
Post by peter on 06/22/16 at 19:01:40

Title: Re: classification Mastocytosis new
Post by Joan on 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.

Title: Re: classification Mastocytosis new
Post by peter on 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

Title: Re: classification Mastocytosis new
Post by Joan on 07/09/16 at 20:26:33

Good! Hope you're not having symptoms either.

Title: Re: classification Mastocytosis new
Post by peter on 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

Title: Re: classification Mastocytosis new
Post by peter on 07/13/16 at 21:09:18

Maybe thay should ad a mast cell [ melanoma ] to the masto list

Title: Re: classification Mastocytosis new
Post by Joan on 07/14/16 at 21:04:03

What is it?

Title: Re: classification Mastocytosis new
Post by peter on 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

Title: Re: classification Mastocytosis new
Post by peter on 07/24/16 at 11:15:14

http://bloodref.com/myeloid/mpd/systemic-mastocytosis-diagnosis

Title: Re: classification Mastocytosis new
Post by peter on 07/24/16 at 11:24:11

Ha joan there is one mast cell disease missing from this link what is it

Title: Re: classification Mastocytosis new
Post by Joan on 07/26/16 at 20:17:56

I don't know....MMAS?

Title: Re: classification Mastocytosis new
Post by peter on 07/26/16 at 22:28:30

MMAS ige venom anaphylaxis chronic MCA no doubt what it was before thay got into the bone marrow Thats when things went bad as masto but its the anaphylaxis that couses the central nervous system problems as now the tryptase is down the central nervous system problems is still there even worse but the one missing is the only non proliferation mast cell disease that couses tryptase to increce early mast cell sarcoma slite pos cd25 ps how come no one els post on hear

Title: Re: classification Mastocytosis new
Post by peter on 08/01/16 at 14:42:11

http://www.bloodjournal.org/content/127/20/2391?sso-checked=true#sec-3

Title: Re: classification Mastocytosis new
Post by Joan on 08/12/16 at 19:09:42

I don't know....

Title: Re: classification Mastocytosis new
Post by peter on 08/16/16 at 17:21:51

ha joan has anyone with isolated bone marrow mastocytosis and ige anaphylatic to bees progressed to full blown mast cell disease maybe the extreme hypersensitivity is able to stop mast cell disease just a thought

Title: Re: classification Mastocytosis new
Post by Joan on 08/16/16 at 19:06:35

I wouldn't know the answer to that. A mast cell specialist might know.

Title: Re: classification Mastocytosis new
Post by peter on 08/18/16 at 10:10:26

My Legal people could not find A mast cell specialist in Anaphylaxis thay give up after 3 years its 9 years and iam still looking i did try your specialist but thay are not able to