A deep dive into misdiagnosis, the chaos it causes, and solutions for navigating the healthcare system.
In my last blog post, I recounted Caitlin's experience with a Parkinson's misdiagnosis. Her doctor dismissed her concerns by saying, “It’s all in your head. You’re fine. You’re normal. It’s just your menstrual cycle causing issues. Go home.”
Meet Tamara: A Misdiagnosis Story
Throughout my two pregnancies and two IVF cycles, I struggled to receive a proper diagnosis. Many, including my family, thought it was Functional Neurologic Disorder (FND) or that I was imagining my symptoms. I nearly started to believe it myself until I fell down the stairs with my toddler and began losing my balance.
Causing severe anxiety and other symptoms coincided with stopping birth control to conceive. When I consulted my OB, she accused me of seeking Xanax. My primary care doctor, orthopedic surgeon, and two neurologists all insisted nothing was wrong and that it was in my head.
I spent a year in intense therapy, even turning to a psychologist who used psychedelics after antidepressants and ketamine failed to 'fix' my brain. A therapist using EMDR suggested I had a repressed traumatic memory causing my symptoms. Finally, a third neurologist took my concerns seriously, conducted a Datscan despite initially suggesting an FND clinic, was surprised by the results and diagnosed me. https://www.apdaparkinson.org/article/what-is-a-datscan-and-should-i-get-one/
It was the hardest year of my life, and I began to doubt my sanity. I wanted to share my story, so I created this YOUTUBE video (#parkinson #misdiagnosed #fightforyourhealth) I also wrote and published a children's book, "The Bunny Who Lost Her Hop" (https://www.amazon.com/Bunny-Who-Lost-Her-Hop/dp/1956867945, which supports Parkinson’s research through the Michael J. Fox Foundation website.
Summary
Caitlin and Tamara were both misdiagnosed by doctors who, rather than offering solutions, chose to belittle and humiliate them. A referral could have saved them a lot of distress. Even a little empathy could have eased their fear.
Moving Forward
This is a systemic issue, which requires changing the narravtive on an uncomfortable topic. For those of us who have already been diagnosed, we have the power to communicate a better solution. The aim is to identify the problem, examine the prevalence of misdiagnosis, collect testimonials, and educate people on solutions to avoid the diagnosis dilemma.
To prevent information overload, I created the blog series:
MISDIAGNOSIS: A deep dive into misdiagnosis, the chaos it causes, and solutions for navigating the healthcare system
Blog Post 1: COMPLETE
Caitlin's Misdiagnosis Story
Blog Post 2: COMPLETE
Tamara's Misdiagnosis Story
Blog Post 3:
Statistics don't lie.; What is medical gaslighting & its effect on patients
Blog Post 4:
Tips on navigating the healthcare system
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