Mackenzie Doyle: 20 years to get correct diagnosis - mast cell activation syndrome (MCAS)

Mack Doyle has been sickly since birth -- and along the way medicine gave her numerous diagnoses to explain her symptoms, none of which turned out to be correct.

When Mack’s allergy skin tests showed her positive to over 140 foods, grasses, and pollen, the doctor didn’t believe it. “Impossible” he said. 

He told Mack she wasn’t allergic to anything, she just had irritable bowel syndrome. But Mack had ‘been there, done’ that with an IBS misdiagnosis before and was adamant she had allergies.

Turns out the patient was right -- she just needed a doctor who could connect the dots of Mack’s various symptoms that pointed to mast cell activation syndrome (MCAS), essentially an overactive immune response by our mast cells.

Part of the problem of getting a diagnosis was that MCAS was not officially recognized until 2007, so even today very few physicians are aware of the disease. That means patients spend many years and a lot of money trying to get a diagnosis and treatment. 

It also means a lot of undiagnosed MCAS patients face repeated gaslighting by physicians in a health care system that quickly defaults to the harmful trope ‘in your head’ for illnesses they can’t immediately diagnose.

Mack not only shares her health care journey experiences in finally getting a correct diagnosis, but also what she’s learned about the myriad ways MCAS can manifest. 

If -- like me -- you have weird symptoms that doctors couldn’t explain or dismissed as ‘in your head’ -- then you’ll want to hear what Mack has learned about our mast cells and how you can manage them better.

Connect with Mack:

Twitter: https://twitter.com/MackWithMast

GoFundMe:  https://gofundme.com/f/help-mackenzie-fight-mast-cell-disease…

Facebook Group: https://facebook.com/groups/MastCell

Personal Facebook: https://facebook.com/mackenzie.doyle.12

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I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer.

If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description:  RemediesPodcast@gmail.com 

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Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error.

If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments.

**For my health and life balance, I limit my number of counseling clients.** 

Email me to learn more or book an appointment:  RemediesOnlineCounseling@gmail.com

Scott Simpson: 

Counsellor + Patient Advocate + (former) Triathlete

I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard.

I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships.

Thanks to research and access to medications, HIV is not a problem in my life.

I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life.

Counseling / Research

I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here. 

Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions.

Patient Advocacy

I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network.

I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada.

Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system.

My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.