MCAS is actually one of the trending diagnoses that has attracted a lot of misinformation and misdiagnosis.
Specialists who treat MCAS are overwhelmed by referrals and requests from patients who don’t meet the criteria or don’t have any basic lab work that suggests MCAS. Many of the diagnoses from primary care or self-diagnoses are from people who have been led to believe that it explains their vague symptoms. There are also a lot of people who believe they have MCAS despite negative labs, non-traditional symptoms and a non-response to medication, which is another way of saying they probably don’t have it.
So watch out. It’s trending among doctors who dabble in alternative medicine or who use it as a catch-all explanation for vague symptoms, but the social media version of MCAS has diverged from the medical definition.
Ehlers-Danlos is another self-diagnoses that is spreading in these communities. This one is so bad that actual Ehlers-Danlos specialists have difficulty sorting through referral requests because so many people and even doctors think it explains vague symptoms. It’s also trending heavily on TikTok.
CCI was briefly popular as an explanation due to a few high profile influencers. For a few years everyone was demanding imaging and sending it to one of a few doctors who specialized in it. Unfortunately those doctors were found to be excessively quick to diagnose. There were a lot of people on forums who rushed into those surgeries with no improvement at all.
Be really careful on the forums. When people start claiming they have a long list of hard to diagnose conditions (MCAS, Ehlers-Danlos, CCI, etc) all at once it’s more likely that they’ve been either self-diagnosing with each trend or they have a doctor who will confirm any vague diagnosis they suggest. These things come in waves of popularity and you can tell when some of these people joined the social media circles by their list of self-diagnoses. Sadly, so much time has been wasted on chasing dead end diagnoses that spread via social media.