Well, there's always a first and it HAD to be ME! LOL.
I had to do what is called a Renal Scintigraphy. This is a nuclear exam that takes a look at the kidneys. They use a type of contrast which does not cause reactions. There are absolutely NO CASES reported for reacting to this solution. I spoke with Dr. Luis Escribano and he said that it is not recognized to cause MC degranulation.
Regardless, I REACTED!
I had looked up on the internet and tried to find cases of masto patients regarding this contrast and I couldn't find a single case report. I has been reported to be of use especially in regards to doing bone lesions studies with masto patients but there is not one report of a reaction. I figured I was in the clear and didn't bother telling my doctors of when I'd do the exam nor even to pre-medicate. THIS WAS MY MISTAKE!
Immediately upon injection of the solution, my vein begin to sting very strongly! As the solution went up through my arm I could feel the changes going on. As it reached my shoulder I could tell something was wrong and felt the solution changing things as it went up into the right side of my face - this is why I began to flush. As it also went down into my chest I began having dyspnea. With both of these symptoms also came mental confusion and brain fog and terrible weakness. I realized what was happening but had difficulty getting the words out in Portuguese to get my purse and my meds! I couldn't connect the words! The attendant finally handed it to me and I fished it out for myself. He called the doctor and as I sat there trying to keep a hold of myself he took my wrist and took my pulse - no tachycardia, but this is normal for me. The place on my wrist where he was feeling, left a spot of pressure urticaria - something which never happened before. My other wrist, where the medication was injected was inflammed and still burning strongly.
His first question was, Do you have Panic Syndrome? I chuckled at that and told him NO, even while I was struggling to keep my control and deal with my symptoms. I had wanted to lie down, but I knew that if I did, I'd pass out. I didn't want that so I refused to lie down and kept talking with the doctor instead. I knew that as long as I could keep fighting this mentally, I'd get past this once the antihistamine kicked in and sure enough this is what happened. As we talked things began to calm down again. He saw that I wasn't freaking or panicking so the theory of the panic syndrome was tossed out the window. He was worried about my throat closing up but I told him that according to the research that Dr. Escribano had done, MMAS patients don't have angioedema as a symptom usually and I believe that this is why I never get wheezing or throat swelling with these reactions of mine. From what I've been asking amongst the researchers, I believe that depending upon the genetic defect itself, the form of the mast cell disorder, this influences our symptoms and their types. This are only MY conclusions, however.
Anyway, things calmed down a good bit and I went into the waiting room for a bit before I went home. The exam itself was only to be about 5 hours later and so I was free to leave, but I ended up having to take a 2nd allegra and continue waiting it out cause things wanted to get worse again. I've never had to do this before. After another 20 minutes, I was better and could leave. I had to return to work and couldn't go home until later, but at work I was not doing well. I had to finally step in with prednisone and yet another allegra about 3 hours later and then went home for about 2 hours before going back to the clinic. This time my husband took me.
I talked with the doctor and showed him my wrist. It was bruised and the vein was enlarged! He was impressed. We spoke about when I have to do the 2nd round of these tests in 2 weeks and for that one I'm going to pre-medicate and we're going to see how I respond to it. The next exam will be that of receiving the injection and then go right into 2 hours of scanning, so this may be trickier for me to have to deal with.
Yet while I was undergoing the 30 minutes of this scan, after the machine was turned on, something about this machine caused me to begin to feel weak and I fainted away. When the scanning was done the technician had to shake my arm and yell into my ear to get me to respond and I was woozy and weak - something which doesn't happen all that often! From there I went home and slept for a couple of hours and kept quiet the rest of the evening.
I've been having to deal with this reaction since adding prednisone and doubling up my antihistamines. My doctor told me to drink "an absurd amount of water" Ha! my doctor is a kick!
She put me on Prednisone until yesterday and told me to have complete rest! (right! something I just can't do at this moment due to my school responsibilities!)
So, I've tried to stay home and did on Sunday, but yesterday I had to come into work and today and the rest of this week I have no choice and must come into work - nobody can replace me right now. But I'm not having an easy time. I'm taking my antihistamines like Tic Tacs and yesterday was still taking the prednisone. Today I haven't taken any but may have to for I was no sooner here in my school when a crisis hit me. I usually will have only flushing, shakiness, weakness and dyspnea but this time I had all of this but I also got the anxiety where I can't sit still and diarrhea also hit me! I was inches away from the full shebang! I don't usually get this bad!
So, WHAT HAPPENED???? I've been speaking with some of the authorities about this as well as my own doctor. This was NOT supposed to happen and I am this one patient who ALWAYS seems to be reacting to things that NOBODY reacts to!! My form of masto is just so incredibly sensitive! I have what Dr. Escribano calls, STRESS ANAPHYLAXIS. This is recognized amongst some of us in that we are so very, very sensitive, that any kind of medical procedure is a risky situation. This is why he has on his protocols that some procedures like a BMB must be done within the ICU or the operating arena where the crash cart material is right at hand.
When I spoke with my doctor she had some insight and we think we know what happened. Dr. Escribano is 100% correct, this contrast is not known to degranulate mast cells and usually this is not a danger to masto patients. HOWEVER, in MY CASE, I have something MORE going on with my system and my body seems to recognize ANY contrast almost as it would the CT contrast with Iodine. CT contrast is indeed a KNOWN MC degranulator and all of us have the potential to react to it. But my body seems to have developed an IgG true allergy to this contrast and my doctor feels that my body recognized this contrast in a very similar pathway as to the CT contrast and this is what caused the reaction!
She said that the bruising on my wrist is proof of the immediate heparin release and that this is why I was "feeling" it going all the way up the line! This is what caused the burning! If we had done some lab testing, my labs probably would have been totally off! I'm going to ask for these tests the day of my upcoming 2nd exam to see what we can find!
I WILL PRE-MEDICATE!!! I MUST!
I have asked the attending doctor to write up a report of this incident for my doctors and Dr. Escribano. We are going to do a before and after kind of report so that he can report what happened without the pre-medications and then after the REMA protocols. The solutions they use for this contrast are very similar and so it should be interesting.
My husband will be in attendance and I will be totally tanked up with meds. I should not react for these protocols have held me before. However, with CT contrast they have not and this is what makes me nervous. I have gotten so very allergic to CT contrast that Dr. Castells had to adjust them for me in order to go through a catheterization last year. I've reacted to the CT contast 2 years ago even using these protocols, which is why she had to adjust them for me. Yet that contrast is a KNOWN MC degranulator and although I did react to this contrast, the reaction was not so very severe. I was able to deal with the symptoms at the time of the anaphylaxis and my allegra did hold me and bring things back to rights. So, this is what makes me feel secure that I will indeed get through this fine. However, if anything should happen, the doctor is aware and he will have my doctor's phone numbers and the hospital is but about 2 minutes away and we can get there faster that the ambulance can get to us!
So, this explains my absence here. I've been a bit "under the weather" and also swamped with work. I WILL BE FINE!! And this is the beauty of having masto versus some other horrific disease!! I know this disease is a tedious monster to have to live with, but it's still normally not this horrendous killer that cuts our lives in the bud! The great majority of us just turn into these horribly allergic RED monsters! I can live with this!
Lisa