Hi! I'm a new-comer to the board. I have been on both Colestid and Cholestyramine. Personally, I prefer the Colestid (it comes generic now as well). I...
Hi! I'm new to the board. Take it easy on me for a little while...this is the first one that I am participating in. I was diagnosed with Mastocytosis last...
Hi, I am a first time poster, but, have been reading most of the postings in this group and found it nothing short of awesome! I am a 44 yo male diagnosed w/...
Hi there, I'm Lisa and I have mastocytosis. I have the brown spots with the itching that turn into hive like bumps. I use zrtec for that. I did carry my son ...
So, before i was diagnosed a few months back (sm/up) i used to take fish oil, but i have noticed it has soy oil in it. Has anyone here had any problems with...
Bridget, I can not eat soy or any other product that has been processed. Except for a few soy bean products they are all processed... certainly the oil is....
(this is being crossposted to a few masto lists, sorry if you're seeing it more than once) hi, my wife was diagnosed with indolent systemic mastocytosis a...
Gel caps, unless vegetable based, are gelatin which I cannot ingest for the same reason I can't have anything that has been hydrolyzed. You say it is a capsule...
... face ... itching ... it ... sufficient doses. It tooks months before I was put on high enough doses to control the itching, nausea and diarrhea. for...
I just have a general question...What type of specialist do you all see? Gastroenterologist? Rheumatologist? Pain management? I originally started with just...
Just another quick question. Do any of you have a port/catheter for quick IV access? When I become extremely ill, which has been quite frequently lately, ...
There was an article in the Mastocytosis Chronicles about ports a couple of years back I am inclosing the article for you Wanda Hermann, Editor/ Board of...
Wanda, Thank you for forwarding the article. I will definitely take it with my to my next appointment. Your help is appreciated. Heather ... couple of ... ...
... was ... the ... completely ... is ... ever ... others ... and ... from ... I was seeing a gastro for my mastocytosis (Dr. Jafri in Kansas City), but after...
... any way, ... least 40 ... a 'typical 'day, to ... limiting ... viatmins, etc. ... Portland, ME ... effectively, it is ... is causing the ... mast cells ...
Hi--its Val responding here. I am going to go through your list of meds, and comment on possible culprits for the cause of your itching. Even though you...
Val, Thank you for your response. I have learned more from you than any doctor I have ever seen. I have often wondered if my meds were interfering with my...
Heather--hang in there. It takes a while to get control of the disease, and even longer to develop great relationships with doctors that know what they are...
Val, Thanks for the words of encouragement. They mean alot. It is difficult when you don't have somebody around that truly understands what you are going...
Hello my name is Alma. I was diagnosing with systematic Masytocytosis Nov 2006. I have seen different dermatologist for most of my life. Last year I decided to...
Hi Alma--where do you live? We can help refer you to one of our masto experts, who can follow you along with your other physicians. You also need to be ...
************************************** Get a sneak peek of the all-new AOL at http://discover.aol.com/memed/aolcom30tour Summer greetings! We have had a...
Alma--who is the hematologist that you are followed by? If you are looking for a hematologist who is well versed with mast cell disorders, I recommend Dr....
Summer greetings, Over the last few weeks, a few new patients and/or members with mast cell disorders have written to ask me what it is like to attend a TMS...
Val - I'm so new to this that I don't know if I need a hematologist. How would I know if I do? I guess I need to start out with a seeing one of the mast cell...
as many of mine seem to be about vanity, but how well do any of you do with getting your hair dyed? I've only been on my full dose of gastrocrom for a short...
Bridget--I have reacted to hair dyes, with throat fullness and chest tightness. for some reason, I do not react to Redkin dyes, so that is what they continue...
