Normally I'm a little more private on this, but kinda feel like talking about it.
I think I've been diagnosed with MCAS. This doctor doesn't have notes published on a portal I can view, but he said I definitely have a mast cell activation disorder. Testing for it is really finicky because typically, they test for tryptase levels (an enzyme released from mast cells). Tryptase is only really released at the start of a reaction and dissipates quite fast, within about 4 hours, and you're just left with the inflammation and damage when tests come back normal and you're called crazy. It's like having an autoimmune disorder that's literally invisible to labs. (MCAS isn't classified as autoimmune, but a lot of symptoms overlap.)
Some people have gone to great lengths to make their tests positive. I'm lucky the doctor just looked at my issues, what was tried, and went "yeah so tests will probably be negative but you definitely have this".
Truthfully I had given up. I had learned about MCAS, but after a decade of googling, misdiagnosis, testing for autoimmune, adrenal, SIBO, hell I even got an endoscopy, I was ready to quit. I didn't want to go through these tests anymore for it to come back normal. This was just my life. Everyone goes through stuff, everyone feels bad, I'm not as strong as others, I'm just being dramatic, ect.
I didn't bring it up to the doctor. I felt like cancelling the appointment, but kept it because I thought at least he could do something about my damn pollen allergies. Then he came in, didn't focus on my ragweed issue, zeroed in on a few tests everyone brushed off, and was like "so this is what's going on."
It explains my severe allergies. It explains my random food reactions. Hell it even explains the joint pain in my foot and the mild headaches I assumed was from the weather.
I've been taking chromolyn (a mast cell stabilizer) for about 3 weeks now and....eh? It can take like a month to show improvement, but some people noticed it right away. I can only differentiate the side effects from my usual problems based on when they happen.
I've been having a bad week, I think I did too much, my body is retaliating and tbh it's frustrating, like. This isn't supposed to happen anymore. Yet here it is.
Antihistamines usually help with this condition, but they don't work for me. My biggest issues are gut related, so I was given a PPI and that doesn't work, either. Now the chromolyn isn't helping and it's like... did I convince myself THIS was the problem again and it's not. or is this as good as it gets
anyways life sucks so go ahead and indulge in trashy media