Hello Friends,

I've been waiting for my BMB results for 3 weeks and tomorrow I get them. I've already prepared myself to receive the "all your test results are normal and I can't help you anymore" talk. A neck to pelvis CT with and without contrast was run the same day and I was able to view the reports online which were unremarkable aside from a 4 mm thyroid nodule. The swollen lymph nodes that so often occur in my neck did not show up as problematic (and I doubted they would since I had avoided triggers for several days and was on heavy premeds of prednisone/h1/h2's). The test results for the BMB only showed me the tests they ran on my bone marrow and said 'see pathology report' for results. I'm concerned they didn't look for the right stuff. They tested: CD2 cells, CD3, CD19, CD25, CD34, CD117, Kappa and Lambda cells (sounds like a sorority!), Wright Stain, leukemia/lymphoma panel. I know the doc wanted to rule out lymphoma, but I hope he looked for masto too.  

My question(s) for you all is how do I get him to consider the MCAD diagnosis? Also, how do I know he treated and evaluated the bone marrow samples in the proper way? And, have any of you had your whole blood histamine tested? Mine was 1493 which was in the range of 180-1800 from the Mayo Clinic lab but when I looked this test up I found lower normal ranges and mine was above normal???

Thanks, in advance, for any help!

Kristi

Hi Kristi,

So how did the consult go?  In looking over the markers, most of them are correct for masto, however, the stain is not.  There are only 3 stains that are considered appropriate for masto:  toludine blue, geimsa and tryptase.  If they weren't using one of these stains, they are not able to look for the mast cells appropriately - they can't visualize it the way they need to.  The markers will help them identify which cells are which for there are cells which look like MCs but they can't look inside the cell properly and this is important too.  They need to know if the nucleus is shaped properly as well as the cell itself.  

As to this coming out positive or negative, I understand your feelings for I've had them too.  Kristi, my BMB came back negative for SM - we didnt'find a single aberrant MC - what they found was normal.  However, the trick is this, they did find other pathological changes which mastocytosis is indeed known to cause.  We didn't find the neoplasm itself, but it cast a shadow and it was it's shadow which helped us know that the neoplasm is indeed there, somewhere, hidden.  We continue to keep looking!

This is very possible to be your case too Kristi, so a negative BMB does NOT rule out a mast cell disorder.   However, what happens is that if you have been investigated for all of the competition and those have been fully ruled out then the lack of anything else ends up pushing out into the forefront the suspicion of a mast cell disorder.

I would suggest that you consider going to see Dr. Afrin in South Carolina.  If you've been worked up for systemic masto, then it's time to find a doctor who knows MCAD!

I hope this helps!

Lisa