Hi Becca! I hope you feel welcome here, I'm glad you found us!!
Yes, you sure do sound like masto to me. Yet, what form is impossible to say without a full doctor's workup. You've definitely got some autoimmune issues going on there with those markers, but before they can be labled as part of your masto you need to have that fully worked up too.
So, the first thing you are needing is a doctor who knows both mastocytosis and MCAS. That's because before a doctor can say you have MCAS he must first investigate and rule out Systemic mastocytosis. Then, if you are showing any markers for MC activation, this will give you the diagnosis of MCAS this is because MCAS is a diagnosis of exclusion, or in other words, they've ruled everything else out and this is what is left over. Yep, it's a "left over" disease!
And YES, Becca, you've got to have a good sense of humor with this illness, it's what helps to keep you sane!
That's because if your masto is very active, you can take quite a beating. However, the good news is that it can be calmed down and brought back under control AND, and here's the good part, even though you can have some very severe reactions those reactions don't mean that you are sicker than another patient. Masto is a disease of contradictions and breaking the rules and although for most illnesses the sicker you are the worse off you are, this is just not so with a MC disorder. The degree of your taking beatings has nothing to do with how severe your disease is and some of us have forms which are so very mild that we'll die of old age if anything! And yet there are those who have the very dangerous form (thankfully very rare) who never even knew they were sick, so mild or non-existant were their symptoms, and yet they had the aggressive form and the disease was only found on autopsy.
So, be at peace, although you've been very sick, if you can find a doctor who knows how to diagnose this and if you work with us and try to learn as much as you can, we can help you find some stability and improvement and your doctor, as he works with your medications will be able to help you turn your masto around.
You are also needing a really good gastro who knows how to look for mast cells and eosinophilia in the GI tract, which is a common finding amongst masto patients. By doing a full search, in finding the cells, this will provide not only understanding but also treatment. This is because a MC disorder creates an inflammatory response within the GI tract and this is what helps to make you so reactive to foods. I am finding that if the food is too hot or too cold this can create reacting in the esophagus and stomach, for MC react to heat and cold. And even the process of the food going down into the stomach, if you have eosinophilia in your esophagus can be part of the problem. So you are needing to find a gastro who understands all of this and can do a real search for these things.
Refried beans -especially pre-cooked are high in histamines and can overload your system, cheese, tomatoes (pizza is both) are also high in histamines and will make you react.
Now as to the naturopath, Iīm not against alternative medicine and if this helps you with your stress this is great for stress and anxiety are strong MC degranulators. However, these doctors, as much as they will convince you they are helping you and they may indeed be doing so, can not replace doctors who understand mast cell disorders. You must have a full investigation with doctors who are knowledgeable about this. Your prior doctors were probably totally clueless which is why youīve not been able to find any relief nor answers, but if you can tell us where you are, perhaps someone here knows of a good doctor near you. Then, after that doctor gets you on the right track, the naturopath can help you improve - but without understanding a mast cell disorder, this professional can not give you the healing you are looking for. We are talking about a genetic defect, a clonal disorder and it requires the support and intervention of doctors who understand this complex disease.
As to excercise, go very very slowly please. Excercise can trigger you and breaking into a sweat isnīt good for in order to sweat you need mast cells and thatīs where the triggering comes in. I found myself in the hospital with a 4 hour crises after playing a 20 minute game of Brazilian Dodgeball with the kids in my school in the early days of my illness!! It was horrible and I got no relief at the hospital because they couldnīt identify it as anaphyalxis and then the next morning I was back in the hospital cause Iīd had a biphasic reaction and again, another 3 hours of horrible reacting without intervention until the reaction worked itself out. Excersize can be done, but itīs best and safer to hold off for some months until you can get doctors who know how to medicate you and help you regain some stabilty. Itīs not worth the risk!
Look Becca, we all miss doing loads of stuff, and yet for many of us, we find that once we can regain some stability we can return to much of that we used to enjoy doing. However, this is one disease which you can not defy. Being strong with it and trying to make it behave, fighting against it is like banking your head against a wall made of granite! Your head will be the first to give!! Masto will win out! Weīve all tried it, to be tough, to try to show it whos boss, to not give into it, etc. You have to understand, this is not a disease which responds well to "tough love"! Instead, itīs more like a spoiled brat who insists on getting itīs way and if it doesnīt will have the biggest Tissy Fit you ever saw until you finally give in.
It will win every time!! They ONLY way you can make masto calm down and behave itself is by WORKING WITH IT and being VERY, VERY NICE to it!! What does that mean? It means that you can indeed drink with your husband and play poker all night, however, since mast cells react to alcohol, you will have to drink non-alcoholic drinks (I'm not even sure if this will work) or just stick with the cokes! It also means that you need to have a really good sleep the afternoon prior to the poker party and then get to bed and sleep all day after it's over! MC degranulate with lack of sleep and it's one of our biggest triggers! Trying to make your life work on only 6 hours of sleep a night can put you into the hospital after a week!!! Seriously!!! I can't handle more than 5 days straight of only 6 hours of sleep a night and by the time the 5th day comes I'm so on the edge of losing it it's not funny! I MUST take naps in the afternoons or I will find myself getting sick at night!! You must be very KIND to your body, listening to it and stop insisting on pushing through it all. If your stomach is with nausea and you've got diarrhea you body is already telling you it's right on the edge!! That diarrhea is a sign of the MCs leaking and if you keep it up, you'll push yourself over the edge! So, be KIND and LISTEN to your body. It's the key to getting back your old activities. But for now, no allnighters! They're murder! - literally!
Please feel free to ask a thousand questions! I'm one who asks millions so don't think you'll be asking too many. We'll do what we can to help you understand what is triggering you and how to avoid it and with that, we can help you break the cycle of reacting. And with the autoimmune form, since this is a yet unstudied form, we patients are basically on our own to try to figure some of this out and that's because we are allergic to our own serum which means that the more you react to triggers, your own system will cause you to have rebound reacting since you are triggering your own self.
So, try to work with us, telling us of your events and perhaps we can give you some insights and understanding which will give you that AHA! moment!
Lisa
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New here.... my story. Does this sound like mcas? (Read 4582 times)
