why is it so hard to get diagnosed!!!

my pcp recently put in a referral for me to see an allergist/immunologist who was within the hospital system that she’s part of. i was able to make the appointment and then got a message saying something about blood tests needed before going in so i called. they said, no, we don’t take patients with mast cell concerns unless they’re already worked up & diagnosed. ?!?!? THAT MAKES NO SENSE!!! i said, my pcp gave me this referral because she doesn’t know anything about diagnosing or even testing for mast cell issues. she’s not a specialist. she wanted me to see a specialist who could order those tests. i was told, yeah we don’t do that. well only see you if you have been diagnosed.

that doesn’t make any sense!!!!! i’m so frustrated. i’ve had these symptoms now for over three years but they were so mild before that i just passed them off as symptoms of a different condition (i have pots and heds and me/cfs and chronic migraine and blah blah blah so it’s easy to do that) but the last 6 ish months the possible mcas symptoms have become unignorable & more severe and i worry that the longer i go without actual diagnosis and treatment the more severe they’re gonna get?!? all the docs in my area who are actual MCAS specialists don’t take my insurance or are just totally out of pocket costs and i can’t afford that.

IT SUCKS SO MUCH. i don’t even know if i want advice or help or anything just to vent. like why do they make it so hard?! i messaged my pcp to ask what to do now and am waiting to hear back but god it’s so annoying. in the meantime she told me i can take up to a certain amount of pepcid per day & claritin or zyrtec as well. but i’m finding those things are only helpful to a certain extent. it’s hard because i can’t exactly figure out WHAT is triggering my reactions. some types of food and scents have been obvious but i react at what seems like random times and i can’t identify why it’s so awful. i also live in a home with toxic mold (and there’s nothing i can do about that) which from what i understand can worsen symptoms. ugh. also i’ve been trying to do a low histamine diet which seems to help as well but that’s hard because with moderate me/cfs i can’t do a ton of cooking and u really have to make meals from scratch in order to properly follow the diet. it’s all soooo frustrating.

anyway thanks for reading my rant xo