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info on mast cell


Guest Finrussak
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Guest Finrussak

When my cardiologist was frantically searching for answers all last year, Vanderbilt emailed him and suggested a rule out for Mast Cell disorders. I have done very little research about this except to say that the entire field is in disagreement about what to call it and how to describe the various levels...so any naming at this point is simply opinion.

I myself havent had bad enough episodes recently to collect urine but the jug is here and ready!!

Basically I understand it to be when the body normally reacts to foriegn invasion ( allergen protein etc) it releases substances (usually histamine + other chemicals) from mast cells that are found everywhere in the body. When this doesnt go right or is done too much or with too many mast cells,or is too sensitive it causes the many symptoms which overlap with dysautonomia. Here is where it gets confusing even for allergists...as of yet it cant be determined if the dysauto is causing some symptoms of mast cell probs OR if mast cell probs are coincidental; or even if the mast cell stuff can cause some dysauto symptoms as a fix-it response!!

In any case Vanderbilt recommended a 4 hr urine catch while having symptoms to test for N methyl histamine...its a special test and most labs will look at you like youre nuts. I had to call MAYO to find out how to do this and then it has to be sent back to them...theyre the only lab doing it. In my case that means handing to Quest for them to sedn out

Also it is suggested by other scientists studying Mast Cell stuff to also have the following (while having symptoms only)

-4 hr urine methoxytyramine

-serum (blood)-tryptase [including total, alpha and beta)

-serum histamine, prostaglandin D2, heparin

Many ER's wont run these special tests...youll need a "standing order" prescritpion that asks for them while symptomatic

Be aware that IF you do have mast cell stuff going on the treatment while in episode is OPPOSITE as the dysauto

with mast cell probs, reactions can be anaphylactic (fatal) and require EPINEPHRINE

However. in many cases of dysautonomia epi is CONTRAindicated and will worsen the tachy and high BP...I cannot repeat this enough...the two treatments are often OPPOSITE and can be very dangerous to mistake!!! try this website as a start:

http://www.tmsforacure.org/patientinfo.shtml

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