Jodi, you are MORE than welcome!! Iīm so sorry I didnīt see this earlier!
I think holding off the CT is WISE and your doctor needs to know that even though you probably wonīt react the way to contrast the way I do, that itīs best to premedicate and not take any chances. Dr. Castells will assure him, with premedication you WILL NOT REACT and so he can go ahead with the contrast of choice. But again, all precautions must be taken especially since youīve already reacted. You should also have your meds increased following the contrast until things settle back down again and the contrast is out of your system.
Now, as to your fears, they are well understood and WE ALL know exactly what you are feeling for there is not a single one of us here who has not gone through them.
Now, let me calm you down some please. I want to give you a bit of reassurance. Your tryptase level does indicate that you have SM and not MCAS, but that doesnīt mean that you are in a bad category of the disease. Jodi, for the majority of us, when our disease makes itself known it usually comes out of hiding when we are into our 40s. When it makes its presence known if it comes out either violently, like it did with me, or mildly as it does with others, this is really UNIMPORTANT! The severity of the symptoms has NOTHING to do with the severity of the disease! This is a known fact. You can be going through absolute misery and you can have MCAS or you can have aggressive masto and die from it an nobody would find out until your autopsy! This is one of the contradictive facts of this crazy disease!
Yet what determines how bad out disease is then? Our blood tests and any kind of organ damage. If your doctors are not turning green, red and white nor jumping sumersaults all around you, then BE AT PEACE you do NOT have any kind of aggressive form of masto. Aggressive masto patients are easy to spot! Their tryptase is way, way higher than yours, up into the 300s at least. They also have major anemia and other issues with their CBCs. The doctors go screaming after these patients for it's a most obvious medical emergency.
So, if your doctors don't look like that face when they see you CALM DOWN you're not going anywhere!
Now, yes, they are rightly concerned and they should be. You're sick! You've just never encountered the face of a doctor who is looking at someone with a disease before and that face is the face they reserve for serious illness. The first time my doctor raised his suspicions to me it was hard not to choke cause he was talking tumors as well as masto! Then to have to face the oncologist was real fun, but after having been put into the ICU with a huge scare, I guess getting the news that I had real illness here was kind of a relief in comparison - it was the confirmation we were looking for, actually.
Anyway, if your CBCs are all normal and pretty, then RELAX youīre not in a bad spot. Your tryptase is only slightly elevated which is GOOD. The tryptase measures the burden of the MCs within your blood and with it being so low, youīre in as good of a spot as you can be with this disease, so keeping your triggers down helps keep the disease under control and hopefully will help keep that tryptase low.
You know Jodi, youīve been sick for a long, long time and had to suffer with all of these symptoms for all that time, with nobody ever paying attention or knowing what you had. Youīve gone through a lot of long-term suffering. I know there is nothing that seems worthy of being thankful for, but yet you should be that FINALLY itīs out in the open so that now your doctor can treat it and help you find relief! I am positive that you are going to be so thankful that finally your doctor knows what is wrong for you will now begin to feel better than you have in years!
So, donīt go giving away anything or writing out any wills, you are NOT going anywhere! Youīd have been gone LONG ago if that were the case!
So RELAX, you are in good hands and your doctor seems to know what heīs doing and will do his best, Iīm sure!
let us know how it all goes, okay?!
Hugs
Lisa