A brief overview of my diagnosis
Tests & Diagnostic criteria for Systemic Mastocytosis
The photos outline guidelines used when diagnosing B and C findings which help with disease classification. I have indolent.
It likely took me 15+ years of seeing different doctors before I was diagnosed. I thought I had developed a nut or food allergy in February of 2022. The allergist had a hunch it was something else. He humored me and tested for all the foods I had consumed and his hunch. I got the results online and googled (don’t recommend).
I was scared when his nurse called me, demanding I come in later that week to see him and have more bloodwork done. I will never forget the look in his eyes as he explained these first results to me, the significance of them, the referrals, and how he knew I didn’t have an advanced stage of the disease, but I needed to be careful. I had a list of medications, how often, and how much I could take that should have helped with symptoms. I carried an epi-pen at all times. Things were trial and error, waiting to see the new doctor, which felt like forever.
I was nervous about my first appointment. The biggest piece of advice is: do not let anyone convince you that a bone marrow biopsy can be done in the office. Yeah, no, that royally sucked. Having a second one done a few weeks later with light sedation was fun. They said I would take a short nap…. I talked the entire time and walked out. My body didn’t behave textbook (it’s a theme). These results took what felt like an eternity to get back fully.
I spent most of the last summer having additional scans done, waiting for results, and researching. I read too many medical journals. I spent so much time frozen in fear, angry over the limitations and grieving the life I no longer had.
References:
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Gotlib J, Pardanani A, Akin C, Reiter A, George T, Hermine O, et al. International Working Group-Myeloproliferative Neoplasms Research and Treatment (IWG-MRT) & European Competence Network on Mastocytosis (ECNM) consensus response criteria in advanced systemic mastocytosis. Blood. 2013 Mar 28;121(13):2393-401.
