Hi Joe ,
I am so sorry you are having such a horrible time. I have has anaphylaxis too .
I will leave the doctor part to the others ( they will have answers ) as I am in the UK .
You have worked out for yourself that a typtase rise , is indicative of mastocytosis , and it is . Alongside finding a good doctor there are some other things you can do for yourslef to minimise symptoms .
go on the low histamine diet , as mastocytosis leads to a lot of histamine release , reducing what you eat histamine wise and avoiding foods which stimulate release histamine is very helpful especially in the pre - diagnosis stage
I think you are under medicated , if you look in jennifers post , yesterday , you will find my list of meds . I am much better than i was , I am still a work in progress with some symptoms coming through, but I am doing much better . There is a list of OTC available medictions on godsgal, which i wrote yesterday . This will give you an idea where to start . As I said there I think many of us have felt considerably better with one from the h1 drowsy , h1 non drowsy and H2 groups . There are 3 videos on you tube - mast cell activation symptomology , which go through these things
They are by the masto specalists .
For you , a BMB will decide which group of mastocytosis you belong to . This will dictate any drugs outside the list I mentioned .
Are these your first symptoms ?
The cells involoved in mastocytosis as mast cells . these only normally misbehave in allergy .
In mastocytosis , they don't die off when they should , leading to a body of mast cells , some mishapen and in clumps ( over a certian size ) you may hear this described as clonal . With any clonal disease it is the speed of cell replication which dictates weather it is symptom controlled or actively treated . In the fast phase it is behaving like a cancer . The BMB will discover weather it is slow ( the majority ) or fast growing . If its fast growing, meds are being used with success .
Mast cells contain histamine , prostoglandin f2 and d3 ,heparin , tryptase , chymase ( and other protiens ) . It is these that give you symptoms . Have you already read up on these or would you like me to elaborate further ???
Have the doctors given you an epi pen ? They feel daunting , but they work . The meds do too . Once your on the right mix ( we are all slightly different ) you will be at lower risk of anaphylaxis . But , as I have to , will have to aware of it .
Mast cells degranulate in the presence of triggers . Sussing yours is vitally important for you to be as well as possible . Deb , our forum lead has done a list , there is also one at the mastocytosis society web page . I think you will find this very illuminating , as I imagine there have been triggers before this last problems .
keeping a symptom and everything you eat , rub in , or touch will help you see your triggers .It will also aid your doctors .
Do you have any rashes ?
I know it feels like there is a lot to consider and there is , but as you go along you will know your signals and know when you are ok and when you need ED .
There is an emergency plan on the TMS webpage , download it and keep it with you with a list of meds . If you need ed , show them this , as many doctors don't know about mastocytosis . In order that they treat you well , tell them its anaphylaxis . They will action that , you can expain more later . If you have some less obvious symptoms , dizzyness , fast heart , they may need this info as if its not clear anaphylaxis they can struggle to know which direction to go in . This will point them right to it . Details of the videos will also help
I have anaphylaxis and understand how it feels . I just want you to know you have found a place where you can come for support .With me Being in the UK , a large number in the US and several in australia / NZ . There are people around on here pretty much 24/7 .
Welcome again
Josie