Ana you sound like me!!!
My masto came out of hiding with my hysterectomy in 2007. My gyno is the only one who took it all seriously because he KNEW that my hysterectomy was NOT my issue!! He didnīt push me into surgery, I made the decision with his help - fibroids that were growing way too quickly with a family history of breast cancer....what other options did I have??? With 3 kids, who wantīs more???? So...it was not a hard decision to make when you want to protect your health. Actually, the surgery and the appearance of the masto saved my life! I had an ascending aortic aneurysm, which is hereditary and we only found that by chance while looking for the carcinoids!! So, if the masto had not appeared with my surgery (I had my first reaction to medication while still in hospital!), weīd never have gone looking and never found the aneurysm!
When I say you sound like me Iīm talking about what you are describing about the tachycardia and the redness and such. The tachycardia is likely POTs. In masto patients POTs can show itself by being either hypo or hypertensive. This is proven to be connected to MC activation and if you google Orthostatic Hypertension with Mast Cell activation, you will come up with excellent articles regarding it.
http://hyper.ahajournals.org/content/45/3/385.fullI once had my pressure shoot up to 230/110 while I was standing waiting for paperwork from my angiologist!! She about freaked because I got ill there in her office and she knew about my aneurysm! Yet, hereīs the trick, while I was there on one of her tables, she had me take catopril to bring my pressure down. It brought it down so quickly that it put me into anaphyalxis!! She argued that it was the medication itself being that itīs a derivitive from snake venom but when we used Adalat at another point in time, itīs a known MC stabilizer, so itīs masto friendly, but it too has the same effect on me. Dr. Castells had to step in to help us figure it out - the anaphylaxis isnīt due to the medication, but itīs effect, the stress upon bringing my pressure down way too quickly!! This is stress anaphyaxis. But the mere fact that when Iīm too reactive, this makes it totally impossible for me to stand still, even in a slow moving line! Yet, when my meds are up to the levels to cut the reacting, then I can face lines pretty well without too many issues.
So, the culprit with your tachycardia isnīt a heart problem in and of itself; The cardiac issues are a symptom, not the cause. Deal with the masto and youīll take care of the cardiovascular problems it causes. The holter is a good idea and see if theyīll do a MAPA as an extra measure. As you know, even negative results give answers. Ruling out is as important as ruling in!!!
The intolerance to cold and heat is typical mast cell behavior!!! The MC degranulates with physical stressors, chemical stressors and emotional stressors. This is why there is a list of medications, foods, and physical stimulators which are known MC degranulators. As Dr. Castells has said, few doctors understand the mast cell. In understanding the MC you quickly understand mastocytosis for it behaves to the triggers just like the MC itself behaves. This is why we go through so much activity.
This is why I say, our reactions to anaphylaxis are NOT like the IgE allergic patients, our mechanisms behind the anaphylaxis are different and it produces different degrees of severity to the anaphylaxis. This is why most of us live through our anaphylaxis even though the potential to have serious episodes are the same as those who are IgE allergic. The potential is always there, but the reality shows differently.
I understand your concerns about the heat and cold. We all go through this and some of us are more sensitive than others. I live in Brazil and our heat is my major concern. I live a prisoner of my home during our summer months and it begins to get hot from November until April! But January and February are our worst months and I donīt dare step outside past 9AM or before 5PM and even then, I need to take an extra allegra before hand or Iīm in trouble!!
The major challenge we face is that most of us have lived our entire lives allergy free and it is a tremendous effort to learn to live chronically allergic! Weīre not trained for this and we forget what our bodies are dealing with and so to retrain our thinking and habits is horrendously difficult and we find that we get into trouble mainly because we didnīt know we would react to certain things, or because we forgot to avoid them!!!
Listening to your body is ESSENCIAL and as long as you listen closely and hear it, then you will find that you will keep a great deal more stable!!
Now, as to that carcinoid suspicion, FORGET ABOUT IT!! YOU DONīT HAVE IT! If you had, then when they gave you the epinephrine, you would have gone into the Carcinoid Crisis. Youīd have had a heart attack!! For the masto patient, epinephrine saves our lives, but to the carcinoid patient, it can kill them!! The way to turn around the carcinoid crisis is with that medicine my oncologist listed in his answer. Yet, this is the curious thing about these two diseases, they give the very same symptom syndrome, but the way to deal with them is totally opposite due to the mechanisms behind the syndrome. Yet this is how they used to tell us apart before the biochemical markers were discovered. What they would do was give a glass of red wine to the patient. The red wine will cause the same effect in both patients, flushing. Then after provoking the flush they would give epinephrine to both patients. In the masto patient the flushing would magically disappear, in the carcinoid patient they would get EVEN SICKER!!!
So, the fact that the epinephrine got you out of your crisis gives you the proof you and your doctors needed - ITīS NOT CARCINOID. Now, there are indeed other things behind this, but emotional is NOT one of them. According to my allergist, allergic reactions are not possible through emotional factors, there is always something behind it. What is the question. So, in ruling out carcinoid, it leaves little else that caused your allergic reaction to the contrast. If youīve done IgE testing and thatīs been ruled out, then you have very little else beyond a MC disorder, and this is what I think is the problem.
I, personally, think the ASST test worthwile to investigate. Itīs proven to be a very important diagnosis for me and it proves that my masto is indeed autoimmune. My doctors suspect Iīm an MMAS patient - that I do indeed have the clonal form of the disease. Itīs just not as serious as the SM patient. The damage it causes is less invasive into the tissues, but the proliferation issues are indeed there. Yet this explains the normal tryptase because this is indeed part of this diagnosis. I have information I can send to you to help your doctors with this. Yet, this is the thing about masto, the geneticists believe that all form of mast cell disorders are indeed of a genetic defect with the MCs, and depending upon the defect with the genome will influence the form of the MC disorder. I also believe it affects the behavior you show. And I also think it has a LOT to do with the autoimmune markers as well - that some forms accompany autoimmune problems as well. Yet, without any study or even a case history which profiles the autoimmune markers, nobody really knows. All of my doctors are walking blind in a pitch black room in working with me and now my children. So, as Iīve said before, what exactly the role and behavior of these autoimmune markers are, nobody knows, not even the highest authorities. Your doctors are free t find out WITH you!! So this is why I think the ASST test your doctors want to do is valid. I understand theirs and your hesitation, but Iīm the kind of patient where I donīt want a single stone left unturned. You canīt confront the beast if you donīt know what he looks like and you canīt fight a hidden enemy. Knowing if you have a positive ASST test will possibly open up doors for future treatment. So far itīs not opend up doors for me, but my doctor is still struggling to find answers. We canīt find a single immunologist who wants my case!! So, even IVIG treatment is not an option yet! Xolair may even be attractive as well, but without any investigation, there are no answers. Yes, going off the antihistamines would be necessary and youīd have to keep a really low profile until you did the test just to keep from triggering, but you might be able to stay on the Singulair on higher doses and try to get by with that. Itīs worth a consideration anyway.
As to the pulmocort, this works due to the cortisone. Yet, there is an inhaler with epinefrine, isnīt there? This would be BETTER!!!! On some masto patients the cortisone doesnīt have much effect, but on those of us who are autoimmune it does. This is why the pulmocorte and oral corisone are so helpful to you, but as you know, the side effects are not good! This is why Dr. Castells wonīt use them anymore and I believe most of the other authorities. The long term is more negative than any short term benefit. And, if you can get your meds up to the right levels, then you wonīt need the cortisone, I PROMISE YOU!! Although Iīm no doctor, I recommend that you have your meds doubled or even trippled and start this right away. You will FEEL the difference almost right away. Itīs like having hidden under a very heavy blanket and when those meds are at the right doses, the relief of having that blanket pulled off is palpable!!!
Iīm going to give you my email address so that you can contact me and then I can send you some articles for your doctors. Send them on to your doctors and read them yourself, for a lot will be explained with these articles and it will help your doctors gain more understanding as to your illness.
Hugs!
Lisa