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Lisa
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Hi Davina, if you don't mind I'm going to step in her and add a few comments to your questions. DavinaRN wrote on 02/23/13 at 10:34:33:I have done tons of research and what I think I know is: 1. I can have reaction to whatever The reacting to "whatever" really depends upon many factors: genetic makeup, whether you are sensitive to things like salycilates, ect, whether you may be autoimmune (this patient seems to have more activity) what form of masto you have (some patients who show aggressive masto never even had a clue they were sick until the autopsy showed it to be the cause of death! The researchers don't know why) whether you are super reactive, or having a good day (a bad day means your "bucket" is full and a good day means your masto is calm and not so easily roused) heat, cold, emotional and psychological state, amount of stress, amount of sleep, etc. etc. There are many different factors involved here and this is something which each person shows differently.2. Although I may not react to it today, I may tomorrow. True, and in the beginning, before you are on appropriate medication, this is especially true. However, in being on appropriate mediation, especially for the MCAS patient, you can gain stability and in having gained some stability this will bring back consistency and thus makes this statement less true. The instability provokes more instability, which is why it's so important to listen carefully to your body. By listening and intervening the moment you begin reacting, cutting back on everything you are doing which could be provoking the reacting and just plain chilling out, you bring to a halt the reacting quickly and thus prevent more reacting and more instability. Once you get the hang of this, you may be able to bring your masto into a kind of remission, let's say, especially if you are an MCAS patient. SM patients can do this too, but it's a bit trickier for them due to the proliferation factor of their MCs.3. I can have set triggers that I will always react to (wheat for me) just intensity may vary Remember, masto patients can have true allergies, and you should be tested for them. If you have true allergies then this statement of yours is true. This is because masto patients who do not have allergies are not being triggered through the IgE mechanism and don't have any anti-bodies to wheat, or whatever, which triggers their MCs. Instead these patients have a direct triggering of their MCs and this is why it's very important to do RAST testing in order to sift through the reacting and triggers. Those triggers which are proven IgE mediated allergies must be avoided at all costs!!! IgE mediated allergies only get worse with each exposure so in these cases Dr. Castells and other researchers consider allergy therapy very helpful in reducing the patient's sensitivity to that reagent. Understand?4. I have a bucket and every time I react to something, even if I don't notice it, it gets fuller. When the bucket spills over I have an Ana which is criteria one- acute onset with skin or mucosal involvement with either respiratory or low bp OR criteria two- acute onset of two or more skin/mucosal involvement, respiratory, low bp or GI issues OR criteria three-super low bp First, when you say Ana, this is very confusing for we have an autoimmune test called ANA. I know you are saying anaphylaxis, but this is one word you can't abbreviate due to the confusion it creates with the ANA test. As to this bucket theory, yes, this is about right. However, let me interject here. With the bucket theory we also have a faucet which is on the bottom end of the bucket. That faucet is our antihistamines. When we feel that our bucket is getting a bit full, and we begin "leaking" symptoms, there are means to reduce the influx and help with the outflux - you can take a nap, turn into a total couch potato, order take out, have somebody else wash the dishes, take a shower (not too hot mind you!), watch a relaxing film, take extra antihistamines. It all depends upon you, but intervene you must or yes, if you are a shocker, you are going to go into a crisis. The degree of severity of the crisis is impossible for any of us to determine and has nothing to do with how full your bucket is!! It more like depends upon the trigger. I've had days where I was doing absolutely GREAT and along come some chick with the most horrendous perfume and the next thing I know I'm vomiting and going into syncope and the doctor's are clueless as to what hit me cause my BP shoots up!!! My bucket was totally controlled and yet that was the Mack Truck which hit me and kept going!!! Yet, you can tell when you're bucket's about to overflow and needing for you to intervene in some manner. Most of us take an extra antihistamine and then cut back on physical activities which were obviously causing the bucket to get full in the first place!5. Half the meds to treat are not covered by insurance I live in Brazil. NOT A SINGLE ONE OF MY MEDS IS COVERED BY INSURANCE!!!!6. There is no cure, it may progress and you have to pray the dr who treats you never moves or dies because its an orphan diease that most are clueless about. Correct, there is no cure, but then that's nothing to cry about. There's no cure for flat footedness or arthritis either! I know that seems a bad comparison Davina, but for the vast majority of us, we are living with nothing more than "mere allergies" and we are not going to progress to a form where the disease begins to seriously damage our organs. Too many people, when they see the literature say "no cure" act as though they've been sent to the gallows, and this is way far beyond the TRUTH! Fortunately for most of us, we will die WITH masto and NOT FROM it! Mast is for us mainly just a royal pain in the neck!!! Yes, it changes your life but then getting married and having kids does too!!! I'm not trying to belittle the fears and concerns you have, they are valid, but I'm only trying to bring to you a better perspective of masto. There are people who have forms of masto which are really bad! My doctor showed me a picture of a 3 day old baby she had just diagnosed with Well-differentiated Systemic Mastocytosis. This baby is now 3 months old, has an enlarged spleen and liver. He is absolutely COVERED, head to toe in skin lesions and blisters and now that he has discovered his hands, he's begun to SCRATCH!!!! I know it's easy to feel sorry for oneself and we ALL do this for we are afraid of the future and what it can bring, but you must not allow your mind and emotions to go down that avenue of thought! It's unhealthy for you and even dangerous. This is because our emotions are very, very strong MC degranulators and depression and anger are one of our worst enemies along with anxiety. If you had a more serious form of masto, you'd have been diagnosed without any difficulty at all. This is how it is with all diseases, the obvious cases are usually the more dangerous ones. Slow is GOOD!!! So, don't worry too much about this. As to doctors, well, that isn't easy, but things are improving!! Word is getting out about MCAS and most doctors are trying to stay on top of their areas. The AAAAI just had a conference and they did some addressing of MCAS. I've found many very recent articles which connect the MC disorders with anaphylaxis and allergies and that means that the lower level doctors are indeed becoming more knowledgeable. Yet, that doesn't get you off the hook of continueing to study your masto and speaking with other patients to keep learning about your reactions and triggers. The more you know, the more you understand, the more you protect yourself and the less you feel vulnerable and out of control!! This in turn gives you a boost as to your overall mood and outlook on life and that in turn reduces anxiety which reduces mediators which trigger you and you begin to have better days and more stability. See where it leads to? SM patients have a harder time with this, but it still works for them too. 7. Oh yeah digestion can be a trigger so the steak you just bought you only get two bites of  In November I went to a Brazilian steak house and took one of the WORST BEATINGS I've had with my masto!!! It was HORRENDOUS!!! I honestly thought I'd have to go to the ER but I couldn't get out of the bathroom for long enough for my husband to take me! When I asked my masto specialist what happened she told me that THE MEAT ITSELF COULD HAVE TRIGGERED ME!!!!!  Why? The ENZYMES!!!! Yes, the digestion MIGHT be an issue, but I'm not so sure about that, unless you are showing elevated MCs in your stomach itself. I tend to think that with your steak, much like mine, the enzymes were what gave you the trouble, especially if it was rare. This last situation and my doctors explanation of what did it, in reflection of other episodes, certainly made sense for I was able to see the connection with other prior situations where eating beef (for me) when it was too rare ended up triggering me. Other's here will say they react to turkey or chicken and so this makes loads of sense and perhaps is why you reacted to the beef. And boy, there was this one steak at the BBQ restaurante which my mouth tingled when I took the first bite! It had never done that before and then not way too long afterwards I began to feel some cramping, not have made any connections yet that I was going to blow up! 8. The ER may think your crazy if you tell them what's really wrong, so just say wheat allergy, make sure to do epi before you go because you may have to wait on it there. I have to say that this has got to be the VERY BEST IDEIA I'VE HEARD YET of what to do with the ER crowd!! YES!!!  A PERFECT WAY TO WARN THEM AND FORCE THEM TO JUMP INTO ACTION!!!! Does this sum it up correctly? Sorry, slightly aggravated right now, that outback steak looked so good. I hope this helps you, Davina. Don't get discouraged, I think that you could try again at that steak, but perhaps you want to have them cook it a bit more to being well done and even take an antihistamine prior to trying the steak out for yourself. Hard to give up on a good cut of beef!!!  Lisa
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Do I understand correctly? (Read 6368 times)
