I am trying to undergo testing for MCAS. Although I had a higher and a lower tryptase and my hEDS specialist says “based on my symptoms and tryptase he had little to no doubt that I have MCAS” when I go to an allergist they don’t think my tryptase is good enough even though I have a 6.0 and 2.6 tryptase levels .They want more tests which is fine but I literally have no idea where a flare starts and ends. I’m always symptomatic, like I said I have long covid and hEDS . I also have POTS, Migraines, chronic sinusitis, allergies and several other issues. This new allergist wants me to do spot urine but I honestly don’t know what’s MCAS (if I have it) and what isn’t. I’m afraid with just 1 or two tests I’ll miss a true MCAS flare because maybe I’m just testing when I have a pots flare or PEM. What differentiates MCAS flares from your other conditions with overlapping symptoms? I don’t get anaphylaxis.
Thanks for your sharing your experience!