Hi, My name is Jodi, and my story started about a month ago when I had severe itching of my hands and feet that spread to the rest of my body.  I have had an anaphylactic reaction before to augmentin and also to contrast dye, so I was certain that I was reacting to something.  I went to  the E.R. where I was treated with Benedryl and steroids.  I was told to see my Dr. as soon as possible.  I couldnt figure out what I might be reacting to.  I started some new vitamins (ones I had aslo tried a few years ago and had no problem with) and I also had a Flu shot about 3 days before symtoms started  (first flu shot I have ever had).  Any way my Dr. sent me to an allergist who mentioned that I had flushing on my hands but at the time had no other symptoms.  He did a blood test that was sent off to Mayo clinic and my tryptase came back at 17.  Second blood draw was done 3 to 4 weeks later no symptoms and came back at 24.7.  I have now been refered to a hemotologist and have my first appointment with him on Friday.  His nurse told me that he would be doing a Bone marrow biopsy.  I dont know if this means he plans on doing this on my first appointment with him or if it would be scheduled after that.  I was told that they suspect mastocytosis.  Very scared at this point.  The only reaction I have now is severe stomach cramping and diarhea about 10 minutes after I eat.  I have suffered for years with acid reflux, and daily headaches and have always had a slow pulse (around 54 bpm) and a low blood pressure, but have always been told that this must just be normal for me.  Any advice would be greatly appreciated.  Thank you so much ~Jodi~

Thank you so much.  I am so glad I have found this sight, it gives me hope !!!

What do you mean by pre-medicated, as i am no longer on any meds.  My allergy Dr. told me to stop all meds until further notice.  At this time I really am  not symptomatic.  I saw hemotologist yesterday Love Him !!!  He has treated 3 other masto patients.  He has ordered the bmb this will be done on Monday, Teusday I will be having a ct of my abdomed and I am currently doing a 24 urine.  He also took blood for a cbc.  tryptace, and liver and kidney function test.  He said they will be sending everything off to mayo.  He thought that by my descrition that I probably have indolent systemic masto, but he said they have to do all of these tests to be sure. and also to make sure that this isnt a secondary problem to something else gooig on.  He also is doing a jack test?  anyone know what this is ?  Will keep you posted.  Am kind of nervous about the bmb but he said since we would be doing this in the hospital that he could put me out if I wanted as I have had several surgeries and never had any reactions.  I am however allergic to contrast dye, so he said when we did the ct of my abdomen that they would do a barium contrast ?  said this would not be as good as having IV contrast but he wanted to get this test.  Hope you all had a wonderful
Thanksgiving and thank you for this site !!!!

Thank you so much Lisa for all of the advice.  I am having the bmb today and the ct tomorrow.  I am thinking about puting off the ct as I have not had a chance to talk to my dr. about the pre-medicating.  I will print off the list you told me to for any kind of proceedures and give it to him today.  Pray for me that these tests come back ok,as I am so afraid of the bad forms of this disease and am praying that if I do have it, it is of the indolant form.  I have not had a whole lot of time to do research on this site, but everything else on the web is so scarey !!  Thank God for this site !!!  and all of you who take your time to teach the rest of us.

Lisa, thank you so much for all of your positive notes of advice, they are much appreciated !!!  I did however go on with all of my testing, and thankfully I came through with absolutely no reactions .  My Dr. told me that all my blood work (cbc) came back normal.  My kidney and liver function tests came back normal.  My tryptase was still elevated at 24.  He was sending all my bloodwork and bmb to mayo for diagnostics.  He said although he has treated 3 patients with different mast cell dissorders, if he has any questions he will just send me to mayo to make sure I am diagnosed properly.  He said once proper diagnosis is made that he will then be able to figure out a  treatment for me.  I am so thankful to have a Dr. that will do what ever it takes to make sure I have the proper diagnosis and treatment, instead of one that think he knows everthing and would take matters into his own hands.  He is not affraid to let me know that this is a very hard disorder to properly diagnose.  Now I have lots of reading to do on this site to properly inform myself on my disorder so I can take better care of myself.  Also I tried to make a copy of the emergency protocall that I should carry with me but it will not copy,  only spits out blank pages ??  How can I copy this ? ~Jodi~

You might try the website:   tmsforacure.org  and see if theirs will print.  I don't know why you couldn't get it to print here.  Or you might be able to copy it into a word processing program and try to print it that way.

Jodi,
  I too had tryptase levels about your range (19-21) other tests were normal.Was worried about SM but bmb was negative for any markers(ckit/cd 25).I did see Dr Akin last month who stated there were extra mast cells in my bone marrow and said I had MCAS-and that there is a subgroup of MCAS patients who have elevated tryptase levels(most do not).

Lori,

A truly NORMAL, healthy person does not have their tryptase raise above 0.9ng!    Anything above this is being caused by some kind of disease.  Aortic aneurysms have been found to raise it up to 2.5ng.  A few other diseases will take it up to about 10, but ONLY systemic mastocytosis will take it above 20ng, which is why that is the level that they set for the diagnostic level.   However, it´s considered the "normal"  ranges up to 13ng because up until recently, there was no RECOGNIZED disease which could be diagnosed with a lower level of tryptase and since there are one or two other conditions which will elevate tryptase levels, they choose not to consider anything below 13 as "abnormal"  or in other words, they can´t pin down any other disease to anything lower than 13 for it´s found in a few conditions.  

Now that they have begun studying MCAS, this will change what they consider as "normal"   but since anaphylaxis can raised tryptase levels and get them up into the 40s or 50s this is why doctors do two readings on us, that of a baseline and that of a crisis situation.  The tryptase taken in crisis indicates anaphylaxis whereas if that is a baseline - a normal, everday reading, then this is what bugs their eyes out for this means you have chronic release of tryptase from your mast cells.  

Now, this comment of shabrans is understandable in regards to what Dr. Akin was saying here.   I understand it because of what Dr. Escribano said to me.  

The tryptase has been correlated to that of the MC burden within the marrow.  The higher the "burden"  or number of MCs within the marrow, the higher the tryptase levels.  My tryptase is 4.6ng.  Not a single doctor would ever say masto with this unless they knew about MCAS.  MCAS has only been recently recognized as a possible form of masto all of its own, but since they are still unsure, they don´t know yet if this is an individual form, or if it´s a pre-SM form.  The final word is still out on this.   We know in my case that the neoplasm is there, but it´s so very hard to find, for either my disease is in its infancy still and this is why we can´t find it, or I´ve got a different form from SM and my form is way too slow growing to show itself.  

Regardless of the form, with a tryptase this low, my MC burden is very low.  

You see, we go back to the theories about the forms.  They now know that ALL MC disorders are genetic in nature.  Depending upon the defect, it seems that this will influence as to what form you have - whether it goes clonal or not.  Some forms seem to be more aggressive than others and this may be what determines the degree of the MC disorder you have.   But because they´ve not yet proven all of this, it remains only theories and it´s going to take more time and energy to find those answers Lori.

So, shebans BMB didn´t show any MC aggregates.  Neither did mine.  However, she showed a higher amount of MCs within her marrow than is normal - it didn´t show a high enough number to diagnose SM, which is why Dr. Akin gave her the MCAS diagnosis.   In other words, she did not meet up to the established level of requirements for SM, but it did not rule out a mast cell disorder which is why she was diagnosed with MCAS.  

Understand now?

Don´t worry about the confusion nor that of asking questions.  This is how it is for ALL OF US!!   We´re working with some really complex things here Lori and even doctors don´t understand it all.    This is why we all try to help one another out so much for we have the right to understand.   It´s not an issue of having the capacity to learn Lori.  We do.  And since we have the same right to learn about this as doctors do, we try to educate one another.   We just don´t have the right to make the same calls and decisions that doctors do, this we can´t do.  It´s a matter of career choices, Lori and I chose to study in the area of Education which is where my degrees are from.  Doctors chose medicine.   But we all have the capacity to understand it if we want to and it´s just a matter of sitting down and investing yourself.   With time the Greek becomes less Greeky and it begins to make more sense.  

Keep asking questions, you´ll catch on!

one more word, however.  Although we can all learn, I must say, those doctors who become experts and authorities truly have an intelligence that I´m jealous of for it´s not enough to study, it takes a capacity to think further on and gain insight and understanding where none exists!!!   Good bless those men and women for their dedication!