My results confirmed TMEP. What's the next step? I've had so many Dr.'s tell me that there was nothing wrong. Who do I see next? Thank-you for any input. Cindy

Wow! I had a feeling based on what you discribed you might have TMEP. Well as you know if have TMEP too, what I did was when I got my diagnoses I found an immunologist/allergist that was familiar with masto. I still see my derm, and I still see gastro and I still see my rheumatologist. I just found a new primary but I haven't had a flare since I found him. Hoping to find just one doc for everything but I hate to tell you I still get referred to gastro for stomach issues and still have to see my rheumey for joint pain. Whatever you do if you can't see the experts at least search for someone who has some experience in masto if you can. Good luck!  Glad you finally got your diagnoses, now you don't have to wonder anymore. Did you have a serum tryptase yet? My derm at the university hospital said I should have mine checked every 12 to 18 months. She also said I should carry any epi pen even if I have not had anaphylaxis. Also she said everyone with masto should wear an emergency medical braclet saying anaphylaxis. I still don't have a braclet yet. Glad you finally know Cindy.
Melissa

Lisa;
Being that I'm also a TMEPer, & you are so well informed;
I assumed that as long as Im on meds,have epipens etc.;n am getting "better" than I was (which is always subjective)- I could put off a BMB. My allergist had suggested it in the beginning. Also, I see Melissa sees several docs... so is it naive to think if we're "doing okay" we should just let well enough alone for the time being ? Or, does it sound like my allergist is doing "enough" ?
lori

Heather I AGREE WITH YOU!!! ..
I can not see exactly what good this does you as a patient....It will not cure it or make it go away...
now others can do as they wish....HOWEVER HOW DOES THIS HELP YOU??
I don't like folks fooling around with my body and until they show me proof that it is needed...I will stick to my meds to try to handle this disease
redbird

Well, here is definitely a controversial conversation for although my tryptase is so low, both Dr. Castells and Dr. Escribano have agreed with my doctors for another BMB.   I agree with them.

Now, before I start off a polemic argument here let me explain a few reasons why I agree.  

First of all, I fully understand and even AGREE with Heather and Redbird and even those doctors who say it´s not so necessary for it does stir up the system and that´s never a good thing with masto.  If there are not symptoms severe enough to warrent this and the tryptase is low and the CBCs are pretty, there isn´t much purpose for the treatment remains the same, that of ameliating the symptoms for the progression of the disease is likely indolent.  

HOWEVER, even in cases where the disease appears to be indolent, sometimes there is a need to "take a look" to see what the bigger picture is, especially in the case of known mastocytosis.   In cutaneous mastocytosis you have a known neoplasm there even though it´s totally benign and indolent.  It still is doing damage and if there is any signs of anemia or the symptoms are severe enough, it´s necessary to see what is going on within the bone marrow for it may open up doors to understanding for your doctor as well as treatment to improve your health.  This is why my doctor asked for my BMB the first time around.   With that reading we learned that my marrow is poor with iron and I have a need to supplement it from time to time.  We also saw other pathological damage going on even though we didn´t find the MC aggregates.  This damage showed that the shadow of the neoplasm is there and it helped towards my diagnosis of MCAS.

However, in light of these findings, in light of my continuing severe reactions, and in view of the recent research on MMAS, this is why everyone would like me to do a 2nd BMB to try to find the neoplasm and confirm the diagnosis.   It may open up some treatment options for me and my doctors, and I, would rather not just play guessing games before considering those options.  It´s better to have further understanding.  

So, without really knowing how your case is, it´s impossible for any of us to really tell you yes, or no, you shouldn´t.   And I very strongly think that this is a decision you´ve got to make WITH your doctors, having them give you a very good arguement as to WHY you need to have this done.  Some doctors get carried away since they´ve never had a masto patient before, but I think these doctors are few.  But since cutaneous masto can indeed go systemic and you´ve got all kind of symptoms, if your tryptase is high enough, it would not be unwise to have a baseline done and thus see exactly what your situation is.   If they see that there is pathological indicators of the neoplasm, it helps them to judge where the disease is for future reference as well as to know how to treat you.  Then, in the future, if things get worse, then they´ll know how much worse.


I understand everybody´s argument as to why not and I do aggree with this attitude, but then I also see the other side of this coin for I´m at this same place with my doctors.    Some might argue that in taking another look it is purely academic and will not change my treatment, but I don´t agree for without having done my original BMB we would have more doubts than we do now and we would be totally unaware of what was happening in my bone marrow and it would leave my doctors more insecure than they are.  

So, I´m for, especially if your doctors feel it´s needed.


Lisa