Hi,

Attached is a brief overview of the patient experience by the Masto Society of Canada which may be helpful for you.

Julie

Hi, try this link:

REMOVED BY ADMIN (due to concern of misinformation)

I disagree with some of the negativity of that article.  I think it generalizes everyone into the same group, and that's not the usual course of these disorders.  I would say symptoms wax and wane in many patients.  It takes time to feel better, and it may take more medicine at times.  Finding a doctor who knows how to diagnose and treat MC disorders and being properly medicated are both really important.  Making diet and lifestyle changes are also really important.  If a mast cell patient does all that, he or she will feel better.  Of course people with more aggressive disease can have a more difficult time, but there are new meds that are becoming available that might change that.

It's your choice, though, how you view this.  Everyone has limitations and there are too many chronic conditions to count.  Someone pointed out that a lot of people wouldn't feel better even if they didn't have masto because they don't take care of themselves in other ways.  If you're de-conditioned and you get on mast cell medicines, you might still feel bad because you're still de-conditioned.  If you don't eat a healthy diet, then you might feel bad and get sick a lot even if your mast cells are under control.

Will people with mast cell disorders get back to their old "normal?"  Probably not until a cure is found.  Can you still have a happy and productive life and feel pretty good a lot of the time?  In most cases, I would say, YES!  It takes commitment to several things:

**Finding a mast cell expert to rule a MC disorder in or out

**Following a medicine plan and asking your doctor for changes when the plan isn't working well for you

**Trying complementary medicine techniques and supplementation to help, if the usual medicines are enough

**Making lifestyle changes in diet, stress level, exercise regimen, to help you feel better physically and mentally/emotionally

**Figuring out and avoiding your triggers as much as possible

**Following a plan to limit your stress level about everything, not just health

Read Deborah's tips for feeling better and other posts of that type.

The important thing is to get a diagnosis so you can start doing things to help your future not be glum!

tallbird what your looking for is the TRUTH in one letter
iam afraid it dose not exsisit
but the mast cell experets could write one not us patients

Having a diagnosis and getting on the right kinds and, especially, high enough doses of medicines are definitely the priorities.  I was on the right kinds of meds, but the doses were too low until I was finally diagnosed, 16 years after onset!  Once I was on the proper doses, my pain went away and other symptoms improved dramatically.

TMS has a lot of important information on its site, especially about medicine, surgery and other procedures, latest research, etc.  I don't think you can beat the info on this forum for practical daily living advice about other subjects, too, like diet, exercise, searching for triggers, etc., about which even the experts don't always advise us.

It seemed to me the article from Canada was designed to impress upon doctors how much MC patients suffer, which is under-estimated by many docs.  It is important for doctors to understand.  However, I didn't see any citation for the claim that everyone gets worse the longer they have MC disorders, which seemed really discouraging.  Even SM can be considered "Indolent."  Some people have been stable for many years with both SM and MCAS.  It would be incredibly difficult to test for that, too, as everyone has different triggers and different levels of compliance with what's necessary to feel better.

SOME RARE DIAGNOSES this is what the doctors are lerning in 2012
Anaphylaxis is a severe, potentially fatal, hypersensitivity reaction of rapid onset. It may trigger life-threatening cardiopulmonary compromise, often with skin and mucosal changes such as urticaria and angioedema. The prevalence of anaphylaxis is increasing and the number of cases of fatal anaphylaxis appears to be rising. Food, insect stings, and drugs are the most common triggers. Novel triggers are increasingly seen and include delayed anaphylaxis to red meat, food-dependent exercise-induced reactions and anaphylaxis to monoclonal antibodies. Anaphylaxis is usually IgE mediated, but other mechanisms also play a role for example direct mast cells activation. Differential diagnosis is discussed including asthma, syncope and shock; excessive endogenous histamine, food related syndromes, and some rare diagnoses. Intramuscular epinephrine is first line treatment. The role of other drugs is reviewed. Timed and serial serum tryptase measurements help to confirm the diagnosis. Long-term management is necessary to minimise the risk of recurrence and includes identification of the trigger(s), management of risk factors, education on avoidance and a formalised treatment plan with an epinephrine auto-injector if appropriate. Every patient who has experienced anaphylaxis should be referred to an allergy clinic for appropriate management. This is endorsed by many national guidelines (eg, UK NICE). Anaphylaxis is often misdiagnosed or miscoded as, for example, asthma or food allergy. Most doctors will encounter a patient with anaphylaxis in their career and should to be familiar with the clinical features, management and mechanisms of this potentially fatal condition.