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MeganMN

MCAS-Mast Cell Info

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Hello all,

   I am still having more and more and more testing and am scheduled to go to Mayo-Rochester in October.  I have had recent testing still trying to tease out MCAS/Mast Cell Disease versus some kind of Carcinoid/NET.  I am looking for your experiences with MCAS/Mast Cell lab results.  I have had two negative serum tryptase levels now (2.2 and 1.8) and a negative urine Methyl-Histamine, negative Serum Prostaglandin D2 levels.  Does anyone ever get a urine Tryptase level?  The only lab that came back abnormal was an elevated Serum Histamine level (1.05).  Can an elevated Histamine alone have any meaning for diagnosis without the tryptase?  Thanks.

Megan

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My understanding is that tryptase is typically not elevated in mcas, mkonly mastocytosis. There is quite a bit of disagreement within the medical community about how to correctly diagnose it

FYI Mayo treats mastocytosis but not mcas, so be aware of that 

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I think there is a dr. at the mayo clinic in Arizona who does MCAS

My mast cell Dr. told me that these tests are typically extremely sensitive to mishandling as the things being measured are fairly unstable

Did you chill your urine while you took it to the testing facility? My dr. said this is important

Plus you can never be sure the people handling your blood/urine did not leave it at the reception desk at the lab too long, etc

This is one of the reasons MCAS testing is so difficult

I was diagnosed based on a few tests, one of which was the plasma histamine level

My dr. also did not seem to think tryptase was a good way to diagnose MCAS

 

But as Stark said, there is a lot of disagreement on testing for diagnosing MCAS

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Thanks! @POTSius and @Stark

      It was the Plasma Histamine that I had drawn, and that is the level that came back as High.  The Tryptase levels have all been normal.  I am just really not sure where to GO with all of this!  They have been testing and testing me for a possible Carcinoid Syndrome and looking for a NeuroEndocrine TUmor (which is the main differential diagnosis that mimics mast cell disease).  There is a doctor at the University of Iowa who is willing to see me and thinks I have an undetected Carcinoid, but another NeuroEndocrine Specialist that I have worked with thinks it is NOT a Carcinoid/NET, but is more likely to be MAST Cell Disease, and I have no idea what Mayo will do.  I really cannot afford to run around to a bunch of different hospitals as this has already been dragging out for a year with thousands of dollars of testing.  I have been self-treating with H1/H2 blockers and Quercitin.  I am now having to take inhaled steroids because of an unrelenting cough/wheeze with new asthma diagnosis.  I began searching the Mast Cell Pathway on my own because no one seems to know what to do with me.   I have considered going to see the Allergist in the area that deals with Mast Cell Disease, but am getting tired of specialists who just scratch their heads and take shots in the dark!  Is it a Carcinoid/NET? Maybe.  Is is Mast Cell Activation and POTS?  Maybe.  But I do not want to keep taking meds and not knowing what we are treating!  Anyway, thanks to everyone for the replies.

Meg

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I had a ton of tests (like everyone here). One of my docs thought I had MCAS. So I had more tests. She said I had a solid diagnosis based on symptoms and some positive tests. So she prescribed CROMOLYN SODIUM. I took it and it had no effect.

Then I got a diagnosis for several types of dysautonomia, including POTS. 

None of the docs think I have MCAS. First, I didn't respond to the cromolyn. This is perhaps a better diagnosis tool than the various tests. Second, several of my symptoms are now explained by dysautonomia, which removes those those symptoms from MCAS as a cause camp.

I just have a weak immune system, allergies and lots of dysautonomia.

2 lessons I've learned:

1 - Most doctor I've seen only look at medicine through a narrow lense of medicine. The MCAS doctor thought I had MCAS. The AI doctor thought it was all autoimmune. The sleep doctor diagnosed me with obstructive sleep apnea before the data came back. The GI doc thought that my gut caused all my problems, and that I just hadn't tried the right diet. I've tried them all. You get the point.

2 - Many docs don't really understand the other parts of medicine. If you get a positive diagnosis for one thing, they don't often take that into account if it isnt their specialty.

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