Is it worth bringing up MCAS?
Not asking for a diagnosis or actual medical advice on here, just wondering what the best course of action is/how I should go about this.
I only just found out about MCAS. I saw someone post symptoms they had and I was like ‘omg same’ and then someone responded to that ‘for me this ended up being MCAS’. I’m currently looking into it. Timeline:
Age 5-7: realised I had allergies for fruits and some nuts. Got tested and a OAS diagnosis.
Age 11: Started feeling ‘faint’ when standing up sometimes.
Age 12: Started experiencing that type of ‘fainting’ more often, not just when standing up. Decided to go to a doctor and got tested. Everything seemed normal.
Age 13: Still experiencing that stuff a lot, it’s making it quite hard to just.. live life. People around me would get scared if they didn’t know I experienced this sometimes and I kept having to explain I’m fine, it just happens.
Age 14: still going strong, went back to the doctor and brought it up again. Got sent to a doctor in the hospital, still no answers. Also started having a hard time swallowing food sometimes, started off with meat, but also started happening to bread and other softer foods.
Age 15: The swallowing issue now happened to other kinds of food as well, would have to puke my food up in order to get rid of the pain and even experienced it drinking sometimes. Went to the doctor and got lots of appointments after that.
Age 16: Went back for the fainting stuff because that still didn’t go away. Kept getting answers like ‘you’re a young woman, you’ll grow out of it’ etc. Practically gave up on that. Went to the hospital for the swallowing issue and got diagnosed with EoE, a chronic infection due to milk allergy (not lactose intolerance!).
Age 17-19: I now don’t eat milk, fruit or nuts anymore, and the swallowing issue has (almost) passed. Im STILL struggling with that ‘fainting’ stuff (it’s not actual fainting), and have since gone back 1 time. Got another blood test and they tested me for POTS. I don’t lack iron, my blood pressure is normal (slightly on the low side, but normal for a ‘young woman’, I dont have pots.
Other things I experience and have mentioned to my doctor:
I cough/wheeze a lot, and have gotten medicine for that to temporarily use
I have acid reflux regularly and have medicine for that
Things I have sometimes but have never mentioned to my doctor because it never came up and didn’t seem relevant:
I sometimes lose control over my bladder out of nowhere, tho it’s only happened at home and it rarely happens.
I’ve gotten diarrhoea a couple times the past few months.
I get nauseous quite often, to the point where I’ve thought I could be pregnant a couple different times.
I get itchy rashes sometimes, they come and go
Altogether, reading about MCAS felt like reading a description of me, but it feels like I’m trying to diagnose myself now when my doctors seemingly can’t. Is it worth bringing up MCAS to my doctor and asking for their opinion on it?