Hello my name is Liz, I am turning 20 years old and have been very sick since i was 15, i have gone from doctors telling me i was psychologically causing my physical symptoms to doctors telling me they had no idea and now to three specialists all believing i have Systemic Mastocytosis i have a serum tryptase level of 12.5 and i am waiting on two 24hr urine tests to come back. They are also talking about doing a bone marrow biopsy. Anyway i have had my gallbladder and appendix out emergently due to an "attack or episode" as they like to call them. I have also had two ERCP's with them cutting my sphincter of oddi all four surgeries happened in about 8 months. I am not sure if they have got it right this time but from what ive read about everyone it sounds like it could be right. I have severe headaches, a bad itchy burning rash that splotches head to toe. I also have syncope and tachycardia spells. Joint aches and about once a month i always get an episode thats like a bad flu with the joint aches, vomiting, diarrhea and so on. they have me on a trial run of hydroxyzine and zyrtec. I would appriciate any input or anything you think i should know... any help is appriciated!

Thanks
~Liz

Hi Liz!

Welcome to our forum and I hope we can indeed help you.  

Masto is known to cause liver/hepatic and GI system problems in some cases.  It would not be a surprise.   My gastro was totally freaked out when my common bile duct was dilated without any cause.  It was later blamed on my MC disorder.  And, if my doctor hadn´t been prudent and cautious I could see her going in there decided to CORRECT things!!

Liz, masto does a lot of things to our bodies and depending upon the form that you have, it can do some serious damage.   However, before you freak out let me balance by saying that before it can be blamed on masto, you can have other things wrong and they´ve got to be ruled out.    The fact your doctors are considering masto means that they are sincerely searching for this is not an easy diagnosis to even consider off the top of their heads.   Your doctors had to be earnestly seeking to have even considered it.  So, that´s a good sign.  

Let them keep working with you for they are interested and that´s a MAJOR plus sign.   If they can´t find anything we´re here and can try to help you too.   We know the tests that need to be run and what needs to be ruled out and we can help give you information which can also help your doctors.  

With that trytpse of 12.5, they´re definitely going in the right direction and I´d say a bone marrow biopsy was even indicated considering some of your issues.  Now, don´t freak over that either for remember, if you are going to be properly medicated and treated, you need to have a firm diagnosis and so far, you´ve been going through a lot of torture without it, so if they ask for it, don´t fret over it.  It´s not as bad and your mind thinks it is and they can alway sedate you for it.   What´s important here is GETTING THE ANSWERS!!!!


I hope this helps!

Lisa