I was wondering if anyone had any thoughts on the test results listed below. Not sure if any flags should be raised as to a Mast Cell issue.
While being investigated for lymphoma (which was ruled out) my oncologist ordered a blood panel I had never had done and a CT scan with contrast. The results follow:
Blood panel result: High ALT was 65 (normal <32), barely high LDH was 254 (normal 94-250), Low IGG was 597 (normal 700-1600).
CT Scan result: Densely calcified aorticopulmonary window node identified of no consequence and small nodes are seen in the axillary region bilaterally. No mass of inflammatory change is noted.
Strange that there's no indication of inflammatory changes when my arm pits are swollen and hurt as well as my groin nodes. I have no infection and this symptom has been going on since June of 2010.
Any thoughts?

Sorry Kim, I've not the slightest!!  

You see, there are so many different ways that the mast cell can be involved that it's hard to really say, especially since we aren't doctors.  For example, my dermatologist told me the other day of a case with a child who has SM and AIDs.  She said that in this case the mastocytosis works beneficially for the child in keeping the AIDs in check!  Who would have thought it?!  And yet it makes total sense, the mast cells are doing their normal job for there are neoplastic mast cells involved with the healthy ones and even though the neoplastic mast cells are present, they still do the job they were designed to do.

Yet, how it's attacking your body, if you do have a mast cell disorder is the trick.  The major problem you face is finding a doctor who can diagnose you.  This is what is so challenging for you apparently are not a classic case of anything specific and it's more of the process of ruling out everything else before they can rule in what you do have.  I've been there and know how frustrating it is!!!  It's a lot of doctor hopping and constant test taking before you finally find some conclusions.  

I'm certainly praying for you to find those conclusions!!

Lisa

Hi Kim,

I've had persistently swollen lymph nodes for almost four years.  It started a few months before the anaphylaxis.  I've been thoroughly checked for lupus, lymphoma, and Castleman's disease, but these were all ruled out.  So... my hematologist is convinced (and I believe him) that these swollen lymph nodes are connected to my mast cell disorder.  Sometimes the swollen nodes in my neck get achy, but I'm finding the pain goes away for a while if I gently massage them.  For whatever reason, the swollen nodes in my armpits don't bother me as much.  When I had a CT scan in January 2010 the largest nodes were around 1cm.  It was a huge relief to rule out lymphoma!

BTW... my tryptase is normal.  The lymph node I had removed had a "normal, mixed population of cells."  The very tiny amount of literature about lymphadenopathy in the context of mast cell disorders seems to suggest that it's caused by mast cells invading the lymph nodes in abnormal numbers, but that's not what my biopsy showed.

Heather