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Dr MR: So would it be accurate to say that mast cell activation syndrome is more befitting for people that may not fit squarely into the box of mast cell activation disorder?
And we really haven’t learned very much yet about how to distinguish the assorted variants of what we’re now calling mast cell activation syndrome in the collective sense. And in the meantime, the term MCAS is what we apply to these more nebulous disorders of activation that don’t otherwise fit all that well with the other forms of mast cell disease, which we had known about for a long time previously.
And it’s starting to become apparent that there even are a lot of mast cell patients out there who, believe it or not, really don’t have a speck of allergy to them. And I hadn’t figured out a shorter way to describe it yet. So maybe a good transition there then would be to try to list—and I know this may be challenging—some of the most common symptoms. But it’s a very complex disease as a direct consequence of the underlying biology.There’s the cardiovascular system with all sorts of autonomic issues, a lot of variability in pulse and blood pressure, palpitations, tachycardia. You can get issues with the hair and the teeth and the nails. There’s the GI tract; all sorts of issues in the GI tract with reflux and nausea, sometimes vomiting and diarrhea or constipation or, even more commonly, sort of an alternating back and forth between diarrhea and constipation, which is just one example of the many opposites you can see with this disease.You mentioned in the musculoskeletal system a lot of pain, diffusely migratory pain. Even in the same patient, just from one point in time to the next, the disease can manifest opposite symptoms, which can really frustrate not only the patients but also the doctors trying to diagnose this.
But we’re now coming to realize that when mast cells activate, they can drive a very wide range of processes that go well beyond the allergy box.