I'm so grateful that the internet exists because otherwise I feel certain I'd STILL be looking for answers. I have had so many awful symptoms my whole entire life but honestly I've just learned to live with many of them for the most part. Until the awful inability to get a good deep breath. LOL It wasn't even the worst symptom I had, but it was driving me crazy. I have seen so many doctors over the years some great and some... well...less than great. I was really nervous to talk to my doctor because of that. I was so relieved when she was open-minded and willing to hear me out.

I found out about MCAS when I was combing through med forums trying to find out why I couldn't breathe. The more I looked the more people I found complaining of the same air hunger symptom and no answers for why. I think I first saw mast cell activation syndrome mentioned in regards to anaphylaxis and I was like, well its's never been that bad for me but it does feel something like a severe allergic reaction. The words mast cell finally clicked something in my brain though, because my son was born with maculopapular cutaneous mastocytosis, a mast cell condition. So I had read quite a bit about that but for some reason I had never connected in my brain the similarities between his condition and mine. But hey, neither did the doctors, right? And they get paid to do that. LOL As I began to read the symptoms list for MCAS, I was shocked to count how many I had always lived with and suddenly a whole lot of stuff began making sense for me. So many different parts of my body, like respiratory, musculoskeletal, digestive, genitourinary, cardiovascular, skin, neurological, blood and coagulation and immune system, had all seemed to be individually randomly going haywire and failing me inexplicably. Turns out it was actually all being caused by one main problem. Some of those symptoms had been life threatening at times and very debilitating on an ongoing basis but none made feel quite as crazy and dig so freaking hard for answers, as the air hunger and inability to get a good deep breath. I agree that I have done a lot of research regarding all this. I always say, no matter how amazing your doctor is, at the end of the day, nobody has to live in your body except for you. We all deserve to live healthy and well. We should all insist on being respectfully and compassionately heard by our doctors and feel the freedom to push until they get us the answers we so desperately need. It's your life, your health and you are worth it all.

P.S. Interestingly, my oldest daughter has Multiple Sclerosis and also has many symptoms in common with her brother and I, and I know there's research being done regarding the role of mast cells in Multiple Sclerosis. And no, I don't think I also have MS, just in case anyone reading this just thinks I am just a self-diagnosing loon now. LOL I do, however, see connections there that seem impossible to ignore and I hope so much that researchers will continue to dig for answers.

P.P.S. Again I am not a Doctor and I obviously have nothing to gain from sharing my medical story but I do have a couple of the random links to the info that got me started learning about MCAS. I am a newbie here on this forum and it won't let me share them but I'm happy to DM them if anyone is interested.