A Parkinson's Disease Misdiagnosis Tale

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A Parkinson's Disease Misdiagnosis Tale


By Vito A. Cosmo, Jr., CPA, MST, CGMA and Person with Parkinson’s Patient

“You have Parkinson’s Disease.” That was the diagnosis from my Neurologist at the Parkinson’s Disease and Movement Disorders Center at Pennsylvania Hospital at 3:30 in the afternoon on August 27, 2012. I had been battling with a tremor in my right hand and arm for ten years when my family doctor encouraged me to see a specialist upon my pre-op exam for a Gall Bladder removal operation.

My family knew something was wrong. My sister-in-law Arlene noticed that I was struggling to pour her a glass of wine at a family gathering at my house. On another occasion, I struggled to pour a simple glass of water at a tax seminar I was giving. My arm trembled, and water splashed all over as I sought to pour myself a glass of water – it was noticeable by the attendees and my co-speakers. They stared. Some gasped. I was embarrassed. What was wrong?

For ten years I suffered with this annoying tremor, loss of my sense of smell, small, illegible handwriting, daily fatigue and an arm that did not sway when I walked. I thought it all was due to aging. I was in my late forties after all, and I did not know what aging would present to me. Over the course of 10 years, I relied on three different neurologists to help piece together this puzzle. Each of these neurologists claimed that I had an “essential benign tremor.” I concluded that it was doctor-speak for “we don’t know what you have.”

Going to the Movement Disorders Center was the right decision. I finally received the correct diagnosis for my strange symptoms.

My neurologists at Pennsylvania Hospital asked the right questions. They examined me. They observed my tremor. They put me through a battery of physical and mental tests. They ASKED me about my sense of smell, my vivid dreams, my handwriting, my fatigue. Why? Because they are “Movement Disorder Specialists.” The previous three neurologists who examined me never asked those questions.

My friends and family are amazed that over a ten-year span that three different neurologists were unable to detect that I had Parkinson’s Disease. Why? Because they did not receive or seek training to become “Movement Disorder Specialists.”

If they had received or sought training as Movement Disorder Specialists, they would have saved me ten years of grief. However, what is even more troubling is that they did not refer me to a Movement Disorder Specialist. WHY? Was it lack of training? Ego? A desire to build patient volume? Maybe it was some combination of all three. Whatever the reason, the decision to not "dig deeper" is a disservice for all who are living with misdiagnosis and struggling to find answers that would improve their quality of life.

I am a specialist in my field. I am a CPA who specializes in state and local taxation. If I receive an international tax question, I refer my client to an international tax specialist. I would not dare to answer that question myself. In fact, I am conducting myself appropriately under the AICPA Code of Professional Conduct, whereby I am not permitted to take on a client engagement without proper training and knowledge.

So, I ask: “What can we do to ensure that all healthcare professionals have the knowledge, skills and, yes checklists, that would avoid a misdiagnosis like mine?" I call on the medical profession to do more to educate doctors to address this issue. As a person with Parkinson's, my demographic is growing. I hope that the knowledge to diagnose and treat this chronic disease will also grow.


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