Mast Cell Activation Disorder

[Lukkychrm42]

SO- when I was at Vanderbilt in August, they seemed particularly interested in the fact that I was often flushed- red in the face. Dr. Raj who did the dynamic volume testing asked if I always had that problem and I honestly didn't know. Paying attention more closely now, I see that I do, and I just stumbled upon WHY I think he was so interested. He published a study in the beginning of this year on the correlation between POTS and the MCA disorder, concluding with MCAD as a probably cause. Reading through it and then googling the term, I found that the list of symptoms mirror incredibly my dysaut. symptoms, including the less-likely BP rising upon standing, my GERD, bone pain, and the GI issues that seem opposite of many others' here, and pretty much all the other ones. Since there doesn't seem to be any other cause for my POTS, I'm really interested in learning more about this.

I think I've seen something about it in 1 or 2 signatures, but I don't remember whose..

Thanks in advance for any info or experiences you might be able to share!

Megan

[Poohbear]

There is a reference to the article you are talking about on Dinets Newsletter (I believe it was the spring addition).

It is interesting indeed. I don't get facial flushing but my thighs will get a red flushing frequently. About the time that research came out I was at Mayo in FL and had some allergy testing done. In the past year I've become intolerant to more and more foods and get an allergic reaction so they decided to do some allergy testing. The experience was quite odd. I had an allergic reaction to the CONTROL test so that stumped them initially. In the end the Dr. said this, in combination with some other things I was experiencing, were indications that my body was EXTREMELY sensitive (both inside and out). They determined that most of my food allergies are what they call oral allergy and not systemic (meaning, likely they will never cause a fatal reaction affecting breathing etc). They agreed I should stay away from the things that give me these reactions.

The allergist said there is some kind of connection between these symptoms and what they call Mast Cell Activation Syndrome (which is not the same as Mast Cell Activation Disease). He says it's a new category and they are still trying to define within the medical community exactly what Mast cell activation is.

For now, it appears my body just wants to attack anything that is new or different (not necessarily what may be "bad" for my body but just what is different).

This makes sense to me and explains why meds, new foods etc cause horrible autonomic reactions. I'm finding if I take a tiny dose of a new med or a food I haven't tried in a while and slowly each day increase a little extra my body learns to tolerate it okay.

I think in time they will see there is a connection in some of this with people like us

[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 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

[Lukkychrm42]

Thanks, guys, that's very helpful.

[nantynannie]

Thank you for posting this study, my doc was very interested in it and thought that I could very well have this disorder. Problem being is when I first got sick, they tried all of these anti allergy medications on me, which worked well for a short period, and then they stopped working. Very much like my body (and others on the board as well) adjusts to the BP meds. I guess it is not only hard to detect, but it can also be hard to treat.

Ann