Hi! I am Deborah, the founder of this forum. I have been ill with the mast cell disease, Idiopathic Anaphylaxis (IA) for 13 years, but have only been diagnosed for the past 3 years! I first got ill in my last 20s, and became so debillitated that the ER docs had no idea what was wrong with me and no one was helping me. I became so ill that I was bedridden and couldn't eat for 4 weeks! Finally, I slowly began to figure out what triggered my symptoms and how to prevent them to a certain extent. For the next 10 years, I dealt with the illness, but was still relatively disabled. Just 3 years ago, I discovered Dr. Cem Akin, the renowned mastocytosis researcher at University of Michigan. Dr. Akin turned my life around -- getting me on the proper medications, educating me more about my illness, and officially diagnosing me! Now, I am so healthy and am able to be a typical "soccer mom" and "cheerleading mom" to my kids. I created and run my own business so that I can pace what I do, thereby avoiding triggering my symptoms. Lastly, I have a husband who entirely understands and helps me with my illness and a family (parents, siblings, etc) who helps me daily so that I can lead as close to a normal life as I will get to.

Bottom line: I was so ill for years, but I never became disillusioned or gave up. Instead I just educated myself more regarding how to help myself, and I did it. You can too!

Hello, My name is Sherry and I am new. I am also having trouble sending any message to you Deborah. I have a 11 year old son who is so sick. He has been out of school for 5 months now. Today was another day at another Dr.'s office, I think this makes 15 now. He has constant lowere intestinal pain everyday of his life. It all started to get worse one morning going to school. He ate breakfast and was screaming in pain by the time we drove him to school.
   Since then he has had two biopsies, is very lactose Intolerate, last two months every procedure you could think of. Collinoscopies, upper and lower G.I. tests, capsule endoscipy, blood test, stool test, the Alcat test with blood cell testing, the 50 shots in the back for food Allergies. Every day and worse at night I hear his moaning in pain. I am wore out, cried out and feel so very hopeless. The expense, the stress and no help for him to relieve him of his pain. This was a very active sweet child that loved baseball, his friends, swimming, alway shad a smile on his face. Now he sits inside all day moaning in pain trying to have a distraction to get thropugh the day like a good movie on t.v. so he wont have to think about it so much.
  Today we met with yet another Dr. Immunologist. She was suggested to check for Mastocytosis by another Dr. She said today she does not thibk so as my son does not have the skin symptoms so she is doing more blood tests that she said wontcome back for a month! I can't take this, nothing again for his pain. Flu like symptoms, fever for months, auto immune? Chills, nausia, headaches and now more and more foods becoming more sensative with more pain and almost allergic reactions. I am running out of food, he has been gluten free,dairy free, soy free,casin free, sugar seems to make it worse.I also believe I had false negative testings done because my son had no gluten or wheat in his system then.
  I live in Tampa, fl and I need help now, my son wil not be graduating this year and he is in 5th grade. He was a A Student and I feel like I am losing him.He has lost so much weight , his little bones show through hs shirts, I can count every rib. The madening Gasterologist told me it was I.B.S. and to go home and be stress free. Also wanted my son to have a physc evaluation.
We did, and he is perfect normal. When asked if he could have one wish what would it be? He said........"no more pain"
  Can someone please help me? I am so desperate, I dont know what to do anymore . I feel so let down by the medical Dr.'s.

Thank you for any help,

Desperate in Tampa,

Sherry

HEY NANCY!!    Welcome to the new, definitely IMPROVED site!!!!   We've missed you!!!    I hope you are doing well, better than ever, in fact!!


As to the subject, that's for when you start a new topic and it's that colored bar that sits above the doodads you see above this box.  Yes, a bit confusing at first, but you'll catch on quickly enough!!

Hope your weather in New Zealand is a nice as it is here in Brazil!!  I LOVE THE WINTER!!  


HUGS AND  


Lisa

I just stopped in to wave at Nancy and tell you that we miss you and are glad you are back for a bit Nancy is one of the people that  helped me survive when I first found out I had masto.. she took the time to help me straighten meds out and made a huge difference to my life!! Thank you Nancy, and thanks even more for being my friend!
love
Ramona