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

Hi Joe!  Welcome!


I'm sure you're pretty concerned about everything going on, and I can't blame you.  Your tryptase is not overly elevated, it's just shy of the diagnostic levels for mastocytosis, however.  It's 20ng/mL when it becomes diagnostic, but in your case it's just splitting hairs really.  Yet, it's good, actually for nothing else will run tryptase up that high other than mastocytosis, but your disease is in it's infancy yet with those levels and so you can relax in the sense that they know what you have, and you don't have to look any further, but you're in really good shape and have no reason to get overly concerned.

What has happend, in truth, Joe is that you've merely become insanely allergic!!   Mastocytosis has its dark side, which is why your doctors want a BMB and to investigate further.  However, that's just to make sure no stones are left unturned so that they can be certain as to how you body is being affected by the disease.  If you had any aggressive activity, your doctors would have found out right away and jumped all over you cause masto, when it's ugly, is really ugly and literally SCREAMS out at the doctors.  Yet, when it's indolent, then it's very mild.  The reactions you have nothing to do with how aggressive the disease is.  The doctors know this and so they rather ignore our symptoms and try to pay attention to what really matters, which are your blood tests and biopsy results.  Then once they've got that nailed down, they give a big sigh of relief and then pay attention to those symptoms.  They did what is right in medicating you.  You should be taking the zyrtec and claritin two times a day and they should add Singulair to your meds as well.  The Benedryl is good for when you feel some extra reacting and it will help to settle things back down again.  

I suggest that you do as Ramona has suggested in that you need to study and learn about the disease but also ask questions for each of us present the disease a bit differently and what may be a trigger for me may not be for you.  Masto is precocious in that sense!  Sometimes we can't even find our tiggers until it hits us and what may trigger you one day may not the next!   I had a huge reaction to some perfume the other day and have never had issues with smells!  It took me totally by surprise and it was a big reaction.  Yet I tossed that perfume out with the trash and I continue using my own as normal.  However, now that I've triggered to it, I know the possibility is there and so I'm a lot more cautious than before knowing I could do it again.  

What did I do with that situation?  I took extra doses of my meds and then cut all activity to ZERO until I was settled back down again and over the huge reaction.   It's very important to try to identfy what triggers you and like any other "allergic" person, AVOID YOUR TRIGGERS!!   If possible!!!

Make a list,
check it twice,
try not to be too naughty, then it's nice!!!  

hahaha!!  

As to doctors there in the NY/NJ area, we have a member here who is from that area who might be able to help you.  I'll see if I can contact her and find out who her doctors are.  However, you are very close to Boston and the two of the highest authorities in the States, Dr. Mariana Castells and Dr. Cem Akin.  If I were you, I'd go to Boston and let them finish the job!!!  It's WORTH it!!

I hope this helps!!

Lisa

Hello and thank you to everyone who has replied to my posting.  Your information and suppurt is greatly appreciated.  I am so fortunate to have found this group and will continue to educate myself with hopes that I can get a better handle on my condition.  

Joe

Hello Josie and thank you for all of the info and support.  I have come to realize recently that these are actually not my first syptoms.  About 12 years ago I experienced episodes of flushing, muscle/joint aches and fatigue.  I never had the allergic syptoms before thus I dont belive my Trtptase levels were ever checked.  These symptoms eventually left after a few months of taking better care of myself i.e eating, sleeping and excercise but would return now and for short time periods.  This last bout has been the most severe and has me concerned.  My Drs have perscribed the Epi Pen, which I hope I will not have to use.  Thanks again for everything.

Joe






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