**A Disturbing Lack of Expertise for a Practice Advertising MCAS Specialization**…read more
I would strongly recommend looking elsewhere for an allergist, especially if you suspect Mast Cell Activation Syndrome (MCAS). This practice advertises expertise in MCAS, which is precisely why I went there. Unfortunately, my experience left me seriously questioning that claim.
From the beginning, it seemed that nobody was actually listening to my concerns. I provided a detailed history of reactions to specific foods, alcohol, latex, fragrances, and numerous other triggers. Instead of investigating those reactions, I was subjected to standard skin-prick allergy testing, followed by bloodwork for common allergens, most of which had absolutely nothing to do with the reactions I had reported. What exactly was the point of asking about my symptoms if the testing was going to ignore them?
To make matters worse, the skin-prick testing was excruciating and ultimately declared useless. I have dermatographia, a condition that causes my skin to develop raised welts from physical irritation. Did anyone ask whether I had it before repeatedly pricking my skin? No. After putting me through what can only be described as torture, the doctor announced that the results were all false positives and couldn't be interpreted because of my dermatographia. I informed him that I already knew I had the condition. He simply hadn't bothered to ask. My current allergist has since explained that skin-prick testing can sometimes be interpreted in patients with dermatographia when the results and controls are evaluated appropriately. I've also heard that this practice continues testing patients without first asking about dermatographia, which is deeply concerning.
When my latex allergy testing came back negative, despite a lifetime of severe reactions, I asked how he explained those reactions. Rather than investigate, he treated me as though I were hysterical and insisted I couldn't be reacting because I wasn't allergic. Apparently, if his tests didn't identify the problem, the problem couldn't possibly exist.
Then came the reason I had sought out this supposedly MCAS-knowledgeable practice in the first place. I specifically asked about MCAS, only to be told I didn't have it because my tryptase bloodwork was normal. Except normal baseline tryptase does NOT rule out MCAS. He never explained the importance of testing during an acute reaction or comparing those results with baseline levels. He simply dismissed the diagnosis. Meanwhile, he suggested my alcohol reactions were caused by an enzyme deficiency more commonly found in people of East Asian ancestry and warned me that it could eventually cause cancer. No testing was performed to establish that I actually had this deficiency.
I eventually went to another allergist who actually investigated my symptoms and diagnosed me with MCAS. Since beginning treatment, my dermatographia, constant itching, dandruff, acid reflux, and reactions to my own sweat have disappeared. My intestinal reactions have substantially improved, as have my reactions to foods, fragrances, and alcohol. The improvement in my quality of life has been extraordinary.
I understand that MCAS can be difficult to diagnose, but that is precisely why I sought out a practice that specifically advertises expertise in the condition. I arrived with a detailed history of symptoms and a strong suspicion of MCAS, only to receive painful and largely irrelevant testing, dismissive explanations, and a confident rejection of the diagnosis I ultimately received elsewhere.
**If a practice is going to advertise itself as specializing in MCAS, patients should reasonably expect its physicians to understand how to evaluate it, recognize the limitations of diagnostic testing, and actually listen to the people seeking their help.**
I paid for specialized medical care and instead received an expensive lesson in why a second opinion is sometimes absolutely necessary. I cannot recommend this doctor or this practice.
