Comments | mastocytosis: might as well make another update

brigid in mastocytosis

might as well make another update

Jun 06, 2007 18:07

I saw Dr. Castells, who is apparently at the forefront of masto research and she has decided to put me on the pretty typical regimen of hi1 and h2 blockera and gastrocrom. then my husband and i are going to go to canada to get some ketofin, since that is supposed to be the best drug aside from the gastrocrom ( Read more... )

Comments 31

jme333 June 6 2007, 23:44:53 UTC

Please share any useful information that you find from the studies you attend. I have shitty doctors here in Utah. LOL

brigid June 7 2007, 00:52:23 UTC

i think it is more that i am going to be a test subject as opposed to a researcher

jme333 June 7 2007, 03:31:10 UTC

I feel like I am totally a test subject.... no one knows quite what to do with me or help me. lol

brigid June 7 2007, 03:39:49 UTC

can you travel to boston or some other city to see a specialist?

Thread 5

stomach problems anonymous June 15 2007, 21:16:06 UTC

youve got stomach problems because your stomach is having an allergic reaction..changing diet doesnt help that much because its going to freak out on almost everything...youve got to give your stomach an antihistamine like zantac,pepcid or tagamet. I've started taking a pepcid in the morning and that helps alot
Tony

Re: stomach problems brigid June 15 2007, 21:47:02 UTC

i'm taking an h1 blocker right now, plus a mast cell stabilizer and those have helped alot.

Re: stomach problems anonymous June 15 2007, 22:04:53 UTC

DO you have any allergies? Like to cats,hayfever,perfumes....sensitive skin?
Tony

Re: stomach problems brigid June 15 2007, 22:31:30 UTC

i have mastocytosis.

i do have a mold allergy, but that is it.

Thread 18

barmybeth June 30 2007, 20:46:49 UTC

Hey, hows all the new meds going, sorry to hear uve not been well.Ive been away on holiday so havnt been able to reply. Have u been to canada yet?

beth x x

brigid July 5 2007, 18:31:57 UTC

i am doing a lot better! the gastrocrom has been helping a ton, and i got some ketotifen in the mail a few days ago. i am going to start that probably next week!

Hey Brigid barmybeth July 27 2007, 06:05:13 UTC

Hi Brigid,I'll be home in a few days and would like to yak some more and give some links.....are you still following this thread? I've been thru alot lately but all is ok....hope you and yours are doing well....
Tony

Re: Hey Brigid brigid July 27 2007, 09:40:05 UTC

hi tony!

yes i am still around!

barmybeth July 17 2007, 10:56:28 UTC

hey, hows the ketotfin going?have u noticed a differance?
luv me x x x

anonymous February 15 2011, 03:47:47 UTC

My eight yr old was diagnosed with systemic mastocytosis. A lot of mast cells in intestines and probably colon. His blood was fine but checking bone marrow soon. One dr tells me it is systemic another dr says itsvonly systemic if it's in marrow. He has constant pain in stomach, extreme episodes of pain at times along with pain dizziness flushing tired... I could go on. This has been going on for a month. Seeing allergist this week. And marrow test soon. Drs know very little. We feel all alone. Any info you could share would be helpful do you know a mast cell specialist who sees kids? What have you been told about systemic. Do you thunk it is systemic like one dr or isolated as another one said? Thanks for any info.

brigid February 15 2011, 03:54:54 UTC

go see a masto specialist. that's the best thing i can say. the bone marrow test will tell you a lot though, make sure it's stained for c kit.

www.tmsforacure.org is a great place for information. or mastopedia.com