Guantai, a MC disorder breaks the rules of medicine. Itīs like a teenager who will defy the rules just to defy without rhyme or reason. For example, there is one rule of anaphylaxis - it ALWAYS happens with HYPOTENSION. With masto, this is not so and there are enough of us who have pressure which will go as high as 200/110 during anaphylaxis. Iīve had my pressure go to 220/110 due to contrast injection!! And when we talk about anaphylaxis, when you ask a doctor what he looks for with anaphylaxis he will almost always say breathing obstruction due to the throat closing up. If you ask for a poll here on the site how many of us have this issue, the overwhelming number will be that it does NOT occurr.
Why?!
This is because with a MC disorder you have the MC degranulating in a very different manner than it would if this were an IgE mediated allergy. The mast cell has recently been discovered to have a SELECTIVE RELEASE of itīs granules. This is because cells have been found to be able to "speak" with other cells. When you have an IgE mediated allergy to something like peanuts you have an enzyme which has created antibodies to that protein and the mast cell has receptors that identify those antibodies and enemies and it will then release itīs mediators en masse and thus create an explosive like reaction - the more times the bigger the explosion. This causes the entire body to react, with edema, (which is the cause for the throat closing and swelling of the interior tissues) brochospasms, (which make the breathing difficult), nausea, vomiting, diarrhea, hypotension, etc. Itīs a MASSIVE reaction and why it is so deadly.
However, with a mast cell disorder, our mast cells are not functioning properly or we have too many or BOTH. This means that they are not being triggered to release en masse like an IgE allergic reaction, but that depending upon what triggered it, depending upon whatever is involved with the reaction, the MC, in its MALFUNCTION will release, sometimes en masse and sometimes selectively, its mediators. Well, this is going to give you various kinds of reactions. And as recent research has been showing, it also may depend upon the genetic defect you have on those defective mast cells which has you doing certain reactions versus others.
For example, I do not have any angioedema EVER. But I go through tons of syncope. This may be due to my form of the MC disorder. And I also get hypertensive in my reactions and only hypotensive when the MC mediator release is less acute. This may be my own genetic version - the researchers still have a great deal to figure out to understand all of these things.
So, when one of us goes into the hospital with vomitting, hypertension and flushing and dyspnea, they will not recognize this as anaphylaxis. This happened with me about 3 months ago and it was due to the heat. They thought it was gastroenteritis. It was only when I went back into the ER about 3 weeks later after reacting to silicone that I was able to talk with the doctor about that prior reaction and told him that my doctors had come to the conclusion that it was not food which put me into the ER but anaphylaxis showing itself with the vomiting, something that I very rarely go through.
This is why masto breaks rules and why our doctors have a terrible time trying to identify it all!!
So, why would this be any easier for US if our doctors themselves canīt figure it out?
I have found, Guantai, that it is through speaking with other patients that some of the riddles of this disease begin making sense for in finding others who have similar reactions and situations that I begin finding understanding. With that understanding I begin to learn how to keep myself from reacting and this gives me more security in dealing with my illness and thus relieves a great deal of pressure and anxiety and with this life begins to return to something more NORMAL - PEACEFUL!!!
As to our core temperature, I find that this is what makes the most sense to me. I live in Brazil and we get some pretty heafty summer heat here and itīs for months. Now in August and early September, itīs supposed to be "winter" technically speaking, however we get a high pressure system over us which blocks all cold fronts and since we rarely go below an average of 75 degrees in the winter, this means that as the duration of the high pressure system endure, the higher the temps and weīve seen it stay about 90 degress on average through this 6 week period with temps up to 104 as well. Then when Spring comes, the temps drop back down into the low 80s and they slowly climb back up to the 90s in December through April with temps in the low 100s in Jan and February. Iīm happiest in May, June and July for these are when our temps are best in the upper 70s most of the time.
In the 5 years Iīve been living with an active mast cell disorder, I have found that I can endure the heat as long as my trunk is kept cool and as long as I am breathing cool air. If the air is hot to breath, this will trigger me. I can have a wet t-shirt on or be in a bathing suit and in the shade, but if the air is hot, then just breathing in this hot air will begin the triggering process. That is because in breathing in either very hot or very cold air you are directly taking those temperatures into your lungs and this directly affects your blood and that inner core temperatue. Granted, it does take more than this, but this is why many of us prefer to have our bedrooms cool and have blankets on us than having the room warmer and going without blankets. This is also why when we get into a tight spot with the heat more often than not just having the AC blowing in our faces and breathing that cool air in will do us more good than getting out of the sun with a breeze blowing. The cold air going directly into our lungs helps more to bringing down that core temperature than anything else.
Yet this is also why when you go into a pool, even though it may be very hot outside, if that water is too cool it you will begin shivvering quickly, this is because your extremities are carrying the cooled blood back into your warm trunk, but if the trunk is emerged in the water then it too is cooling down quickly and your body is beginning to react to it.
This is why for surgeries there are protocols written by Nancy Gould that the doctors need to put you on a warm table and have warm IV fluids being pumped into you. Those cold fluids cause the MCs to react and by not being on a warm table, especially since it is metal, your trunk is also being exposed to cooler temps and your core temperature is being reduced as well.
Now, if this has anything to do with having a low body temperature, I have no idea! All I know is that I feel the cold more quickly than ever before in my life and that I feel the heat more too!!! Thatīs my life with masto!
Lisa