Yes, I definitely fit the systemic mastocytosis symptoms, and it’s been brought up before, but just labeled as Mast Cell Activation Syndrome (MCAS), which I also definitely have. The fact that one set of labs had normal RBC is winning my hematologist over but not me. Labs fluctuate all the time, especially near IV saline infusions.

My PCP will fill out a form for Mayo’s second opinion program, where I’ve been denied and accepted lol, but hopefully it’s a simple enough case, ignoring my medical history.

My hematologist can’t prescribe the Ayvakit since I don’t meet the WHO or ICD-10 criteria, but my allergist, who can make a case of using this for MCAS, will have to be the one writing the prescription. My follow-up with her is 1/13. However, I did email my nephrologist, since there is a renal impairment warning on the Ayvakit. The second option is Imatinib, which is fine kidney wise since I was on it shortly, and the third he suggested was Hydroxyurea. It’ll definitely be a “collaborative” effort between hematology, allergy, and nephrology.

I was diagnosed with MCAS long before it was separated from being apart of hEDS symptoms, since my doctor had connections at NIH. The fact systemic mastocytosis has been denied for over 10 years is baffling, I think. My gut isn’t always right…the epilepsy was a shock to everyone and I was quite wrong, I certainly have it! And my bloodwork still isn’t 100% consistent with lupus and/or MCTD, but my rheum tests me every year since we both strongly believe that it’ll start to change. It’s also strange that the symptoms came with the polycythemia, but I think I’m the only one hung up on that. But when that hypocellularity came back, it really defeats the case. I’m new to hematological issues, and I most certainly didn’t attend medical school, so it’s still a bit new and I’m still learning everyday. There’s so much overlap with pre-existing conditions, it’s making me quite frustrated. Having your perspective, a patient, is invaluable, though, and I really appreciate you taking the time to explain!