Hi,
I strongly suspect I have a mast cell disorder of some kind. I have multiple comorbidities (EDS, POTS and an IBD), and my tryptase levels have come back as 19.3 and 17.9 which I am told is very high.
More than just the annoyance of the allergies I've been having a lot of laryngospasm and paradoxical vocal cord dysfunction episodes. Sometimes narrowing or completely closing my airway.
Unfortunately, I live in the Greater Boston area. Brigham and Womens has the largest mast cell disorder clinic in the country. I think because of that, other hospitals in the area don't take mast cell disorder patients. My hospital doesn't and they refused to do any testing for me. My PCP tried to help and sent a referral to Brigham with the tryptase tests results, but Brigham refused to take me. And even they eventually admitted that their regular allergy department wouldn't do any testing for me.
Does anyone know anyone in the Greater Boston area that does mast cell disorder testing and treatment that isn't Brigham?