Thanks Val, I have sent Bill a message about information/advice here in Australia. Sodium Cromoglycate capsules do not seam to be available here! An Australian...
I had pelvic floor surgery this past week (last October 2), and just wanted to say that the TMS website once again rules! I printed out the surgery information...
Dear Kris, I'm happy to hear that your surgery went well. I'm sure I won't be alone in sending you positive, healing thoughts. Please take good care, --Candace...
I was wondering if anyone could give me any information on Dr. Akin. Does he see patients outside of research? What is he like with children and what types of...
Was wondering what others have put on their medic alert bracelets. Obviously all the allergies, histimine triggers won't fit. Even just puttin mastocytosis has...
Here's what I put--and Doctor Akin liked it when i showed him this past summer! Mast Cell Disease Subject to Anaphylaxis Treat with Epinepherine Followed by my...
Tacy Heisey
theisey@...
Oct 12, 2007 12:01 pm
222
My doctors are debating wether my Masto is sytemic or only contained to my skin. I have had two different opinions from my Bone Marrow Biopsy. I am going to...
Candace, Besides PUVA, which I have heard the same things! what else should be taken.. Basically are H2 Blockers needed for skin or only H1 blockers? Thanks...
Dear Chris, My first reaction to your question was, "No, H2 blockers are only really helpful for digestive symptoms." But subsequent research proved me wrong. ...
... just ... paramedic ... give. ... before ... or ... I am IA with slightly elevated baseline tryptase and launch into attacks to so many things that I...
I have on mine: Asthma Uses Service Dog Mast Cell Disease Atypical Anaphylaxis Anaphylaxis to PCN The reason I put Atypical Anaphylaxis is incase they don't...
Thank you. I have heard of the flash drives thru medic alert and have actually already planned on purchasing one. My only problem with the bracelet is because...
Re: the medic alert bracelets, I too wondered about what to put and was also quite limited by space. I had to abbreviate and did the following (the max space...
Tasha, How old is Braden? You can actually LIST all the foods on the zip drive and on their computer so that any medical professional or anyone else can...
Tacy Heisey
theisey@...
Oct 14, 2007 11:51 pm
231
The doctors at the TMS meeting this week in Houston said the first word on any medical ID bracelet for any patient with a mast cell disorder, adult or child,...
Tasha, Both Dr. Akin at University of Michigan, Ann Arbor, and Dr. Castells at brigham both treat children. Both are excellent. Dr. Akin is kind, gentle,...
Braden is 22 months old. Yeah, he actually is allowed NO food and is tube fed only. He reacts to SOO many things. The other disease he has causes him to...
AND, I forgot to mention that I really felt like I should be doing so much more to help the small minority that are working so hard for all of us. We could be...
OMG! WOW! TOUCHING! WONDERFUL! EXCITING! FUN! My family and I just returned from The Mastocytosis Society's annual conference in Texas around 2:30 a.m....
We are delighted to announce that so far the TMS Walk-a-thon has brought in $14,280.29 for mast cell disease education and research!!!!! Did you do your...
Our granddaughter just had her first significant outbreak of red spots. Identified with Masto at age 2months...only has one spot that festered up then....we...
Hello! My name is Melissa and I stumbled across this group while trying to find new ways to detox (I'm really into body detoxing, natural stuff, etc. to...
Hi there! For those of us who were unable to attend the conference - will all of that material - binder, etc. be avaiable for us to purchase?? I would love to...
Marylynn The conference was videoed and it will be available in a couple of weeks for purchase. The price of the video is 50.00. The order form is on the tms...
I have had episodes twice now where my vision was blurred by flashes of bright lights every time I looked up towards a light. It was really weird and I felt...
Dear Christine, it sounds to me, that you think that these flashes are masto related. I am not sure, if they are. Usually people see flashes, when there is ...
I read on the internet that whote flashes could be a drop in blood pressure, which is why I thought it might be masto related. I have been to the eye doc a...
Sounds like maybe it could be related to a migraine to me... Maybe the food you were eating is a trigger for you. Migraine's do not have to be painfull... I...
Dear Andrea. I agree with you one hundred percent, blurred vision and flashes of bright lights would not be a normal masto symptom, and is often a sign of...
