#mcas So I've finally began the process of trying to get MCAS diagnosed. I saw someone at Guy's and St Thomas in London back in 2021 but all i got was a letter saying 'suspected MCAS, cannot be confirmed by any test' and meds which weren't sufficient. I was honestly so astonished and impressed with the doctor I spoke to this week. He was very thorough, explained things very well and made me feel really listened to. The consultation lasted about 80min! 😳🙊 As it also turned out some of the symptoms I have point to mastocytosis so doctor suggested doing a bone marrow biopsy and genetic test for the KIT gene. And the most amazing part- this doctor works at the institute for Mastocitosis and mast cell conditions, basically the only centre specialised to this extent in Spain which is located 650km from me. Due to my spinal instability there's no way I could go there so he's offered to arrange for the tests to happen at my local hospital and the samples to be sent to his hospital! 🤯 Bonus- I'm in email contact with him and I'm supposed to get in touch if my symptoms get worse (he's made some changes to my meds). Honestly, i think this is is the first time ever when a doctor cares / treats his job so seriously to treat me like this. And questions - is anyone here diagnosed with systemic mastocytosis? Has anyone had the bone marrow biopsy done and could share some details about the procedure? Many thanks, happy Sunday! 😊

Posted by olgalipska at 2023-07-09 13:49:02 UTC