Not the Ketotifen, it is working brilliantly despite me re-triggering myself and having to break out the Xanax over Christmas. Now that I’m back to baseline again, I can feel just how well it is working and I am glad I stuck it out. I have a feeling over time it will prove to be a miracle drug for me, much like the Gastrocrom is.
I’ve been reflecting on the last couple of years, rather, and marveling at how it feels to have a diagnosis of mast cell disease. After a lifetime of suffering, literally from birth, it feels surreal still to know what’s wrong with me, even if I still don’t know exactly why I have been *ahem* blessed with such a (not so?) rare disease.
The real blessing is in the diagnosis. It gives me a direction to go with treatment and, most of all, hope for achieving total remission someday. I’ve had a taste of it and I want moooooreeee.
There were times over the years, though, that I had all sorts of theories about what was wrong with me but struggled to come up with one that fit. I can laugh at some of them now, like thinking maybe my dad was right and maybe the Agent Orange he encountered in Vietnam permanently altered his DNA which passed on down to make a mutant version of me.
Nah. It definitely runs in my mom’s line, now that I know what it is.
After having seizures as a little kid and falling down and hitting my head a lot, I was pretty sure I had some sort of concussion syndrome. That explained the brain fog, mood swings and headaches, but not the hives, permanent stuffy/sniffly nose and other stuff, though.
Nope, not that.
My research into mercury in vaccines got me thinking I might have mercury poisoning from all the vaccines . Or from my multiple fillings I’d had as a little kid, so I had all of them removed a few years ago and replaced. Some symptoms DID let up, which made that theory plausible, but again, didn’t explain why I was sick from birth — before vaccines and mercury fillings came into my life.
Was it from the mercury in my MOM’S FILLINGS? Probably not.
Was it the bacteria in my mouth, lurking under the gum line from all the inflammation? Again, I was sick from birth, so…
A tick bite when I was about 10?? Again, I was sick from birth, so…
Was it an allergy to dairy since my (I will be kind here and use the word ignorant) mom gave me whole cow’s milk, cream and all, shortly after birth??? I thought so, for awhile. It’s entirely possible that helped to trigger my MCAS, the same way growing up in an extremely dysfunctional and filthy birth home did, but these are not the cause of my MCAS. I know that now.
Again, I believe it runs in my maternal line so I definitely inherited it. I passed it along to my son who was breast fed (with human milk!) and grew up in a healthy, clean environment. He showed signs before his first vaccines, and has never had a filling. Heck, he showed signs even before birth, if I am to be honest here.
So my diagnosis has put all of these crazy conspiracy theories to rest, once and for all.
It was exhausting trying to figure it out on my own over the years and I’m so very glad that’s behind me. Now I want to go hug my immunologist for (finally!) figuring it out! Have I mentioned I love my doctor?