"I'm just seeking some sort of resolution and appreciate any insights anyone can offer."
Hi, for starters I'd point out that noted MCAS doc Afrin uses the principle of Occam's Razor in the title of his book. So that supports the idea that it's wise to assume at first that the MCAS is related to everything, unless there's compelling reason to figure otherwise. You can, e.g., even find patients with only tinnitis who are online saying that their own tinnitis is inflammatory.
I don't think you should look for a particular specialty, but rather nope to get the right individual doctor. But finding a Diagnostician might be a good direction to go. Or an Internist who bills themselves as "Functional Medicine". But then again it's also possible that by chance an ER nurse might know something very valuable to your case.
I'd try mast cell stabilizers to see if there's any benefit. The granddaddy of MCAD, Dr. Theoharides, focused on using luteolin. There's also quercetin. They are OTC.
"...severe pain in my left arm, shoulder, neck, jaw and chest, my doctor also referred me to a cardiovascular specialist." Right, because it's prudent to rule out something very dangerous, even though that was not ever the most likely cause. Inflammatory substances like bradykinin and Substance P caused your pain, most likely.
There is a lot of overlap between MCAS and some cases of Chronic Fatigue Syndrome and/or Fibromyalgia. You might find it interesting that CFS was almost renamed to Systemic Exertion Intolerance Disease. That points to a biochemical trigger, rather than a mechanical trigger - but you can e.g. try a single set of medium weight bicep curls to see if that causes eventual severe pain. That's different than exercise metabolites from endurance training. Those sort of self-experiments can provide useful clues.
"just in case specialists..."
Nope, no doctors are here.
One thing I'd wonder is if there is one-sided lymphadema that is causing the swelling because of something like closed valves, or if instead it is just the more usual swelling based on inflammatory mediators like histamine.
' If it's "only" that, then I certainly can keep living with it."
Well, no. You should be carrying an Epi-pen or similar. You don't know how much worse it might suddenly get.
The severe swelling might damage blood vessels or other tissue.
You also are experiencing repeated bouts of severe inflammation and possibly chronic low level inflammation that can bring long term problems, such as increased risk for heart and cancer. What are your CRP, hs-CRP, and ESR blood tests?
You should absolutely want to figure this out and counter it as much as you can, if possible. Absolutely.
I'd just find one or two of the Afrin talks on youtube, no reason to read the book.
What if you apply heat on the arm? MCs do have heat and cold receptors, of course. Over one hundred receptor types known so far and two hundred mediators that get released.
Are you certain that the "gyno" is really hormone mediated fat deposition, and not just water/edema? Or maybe there is a base of fat and then also edema occurs during episodes?
I don't know if a mammogram can distinguish between water and fat there, but an ultrasound likely could. We know that fat could not suddenly increase then suddenly go away.
"but this left-side situation just tends to freak me out, mainly because of the swelling"
Yes, there is something different in the tissue on that side. Something odd.
Now consider this: there is no direct communication between the arm and the ear on that side. Why does the inner ear swell the same way the arm does? Why not both ears? Anything odd in your history? Any infection or toxins or impact trauma?
(Lymph fluid flows up the arm, over into a major vein then into the heart.)
"I just have some anxiety that within a year or two I might find out, for example, that I had some kind of cancer that might have been treatment responsive if caught earlier but now it's too late."
I don't see that being involved here at all.
And btw, it was perfectly fine for you to post your case on this forum :) Feel free with any questions whatsoever.
"Heat and aspirin/ibuprofen seem to be my most severe triggers."
Salicylates are in some foods (aspirin is acetylsalicylic acid). Did any doc tell you that?
Also histamine in foods is a problem for some. There was e.g. the "Low Histamine Chef".
I wouldn't try to tough through it anymore, you most likely can't get used to it that way but might make it worse (by upregulating heat receptors on MCs).
Core temperature can get surprisingly very high in exercise, say over 107F as a guess. The intestines have 'heat shock proteins' that can break down and that can lead to leaky gut which leads to generalized inflammation - which can make MCs even more likely to get set off.
"My cardiologist felt strongly that the pain on my left side, but not the swelling, is nerve related."
That's not their field, and anyway it doesn't fit.
"What throws me and concerns me is the swelling in the same areas. It seems like a really odd coincidence."
Yes, you are correct. If the swelling and pain occur together and then go away together, in place and time, then the sudden onset pain is not at all likely due to that (excess bone growth pressing on a nerve root which exits the spine). Still, overall inflammation can influence that effect - more below on that.
That's outdated, from 7 yrs ago, in an evolving field. You had onset at a young age, so that together with your MCAS tends way more toward inflammatory origin than to 'wear and tear'.
You would more properly be put under SpondyloArthritis (SpA), which is inflammatory. That also gets back to Occam's Razor.
There is a test for 'HLA–B27' but that's not definitive because you can have HLA–B27 and SpA, or HLA–B27 and not Spa, or not HLA–B27 but with SpA.
In SpA, some MD researchers are looking into a link between SpA and a starch-loving gut bacteria called Klebsiella that can produce lots of inflammatory effects. In your case, it might also make your MCs overly reactive. Like a rising tide.
You can try keeping a food log. Probably you already have.