Comments | mastocytosis: Intoduction

gothy_geek in mastocytosis

Intoduction

Jun 06, 2007 18:11

Hola:

Thought I'd introduce myself.

I've had Systemic Mastocytosis/Urtiacaria Pigmentosa since I was 3 weeks old. I am now 38.

Comments 8

jme333 June 6 2007, 23:43:06 UTC

I've had it since I was about 35 and I'm now 40 and just got a diagnosis a few months ago. I just have the Cutaneous/Urticaria Pigmentosa. My legs look like a leopard. LOL

Nice to meet you.

gothy_geek June 6 2007, 23:45:00 UTC

Oh, I feel ya honey. :+)

I have UP over my entire body and have had it since I was a baby. The only place I don't have it is the bottom of my feet.

I'm SPECIAL. lol.

jme333 June 7 2007, 03:33:33 UTC

They are spreading all over my body too, but they are still pretty faint in my torso and chest. So far just my thighs are a connect the dot game. :)

What kind of meds are you on?

brigid June 7 2007, 00:54:49 UTC

i have Systemic Mastocytosis/Urtiacaria Pigmentosa (which you already know)
i have had the UP for maybe..4 years or so, but only in the past few months did the other symptoms really kick in,like the GI and flushing. that's a party.

most of my spots so far are on my arms and torso...they seem to be increasing in number, but i don't know if the gastrocrom will help slow that down or what.

jme333 June 7 2007, 03:34:17 UTC

How did your bone marrow test go?

brigid June 7 2007, 03:38:15 UTC

i am not stable enough to have one yet. we're going to wait till i've been on meds for 6 months since the blood test obviously shows ISM so there is no change in treatment if we do the bmb

hello anonymous June 15 2007, 21:25:40 UTC

Hi,I cant sem to get thru the registration part so I'll post in the comments under anonymous.....Got UP for about a decade now. About the stomach problems :
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

3angelsofmine October 11 2007, 15:46:14 UTC

I was told by my doctor that my son will grow out of it. He's had spots since shortly after birth and was diagnosed at 4 mo. Question then: Is it true? Will he indeed grow out of it or will he have this for life? Also, if I may get a bit more personal, what was it like growing up with masto? I am a parent of a little boy with UP and am looking for insight as to how to handle this as he gets older. Are there things you wish your family would/wouldn't have done? If you are willing to share that would be greatly appreciated. Thank you, Erin.