The ‘Now what?’ that follows a misdiagnosis

What do you mean my diagnosis was wrong? Now what?

Christina Applegate recently disclosed she was misdiagnosed with multiple sclerosis. The actor admits she is now having her “now what” moment, and is now in search of a diagnosis to explain her symptoms and a treatment.

I was diagnosed in January 2017 with idiopathic pulmonary fibrosis (IPF). My path to a confirmed diagnosis took around three months and started with a simple chest X-ray my primary care physician ordered. My wife, Susan, had insisted I ask for the X-ray due to my persistent cough.

It wasn’t pneumonia, but something was affecting the interstitial area of my lungs. I saw a pulmonologist who suspected pulmonary fibrosis. He knew that Steven Nathan, MD, at Inova Fairfax Hospital, was an expert in IPF and called to arrange an appointment with Nathan while I was sitting in the exam room.

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When there is no answer

My diagnosis was confirmed on the last day of January. Others are not as fortunate; they are misdiagnosed. Some estimates put the rate of misdiagnosis at 10% to 15%. Even when a misdiagnosis does not result in someone’s death, it often means starting over. Like Applegate, patients want a diagnosis that explains their symptoms and a treatment plan.

Four years ago, I shared the story of my friend Sharon Eon, who was misdiagnosed with IPF. I met Sharon through the Pulmonary Fibrosis Foundation’s (PFF) Ambassador program. She lived in Maine, and I was in Virginia. We found a way to collaborate even though we were miles apart. I still recall the day Sharon told me she was misdiagnosed. It was a new experience for me.

My first question, without thinking, was: If it is not IPF, then what is it? There was no answer.

It occurs more often than you might think. It’s not a recent problem, and it’s not always the doctor’s fault. My advice to anyone who has been misdiagnosed is to keep seeking answers. While a law firm may offer different guidance, a misdiagnosis is not necessarily an example of medical malpractice.

Moving forward

When you receive a diagnosis, you face a choice. You can accept it and move forward, or you can seek a second opinion. If you learn you were misdiagnosed, your response matters. You cannot freeze. Your diagnosis may have been wrong, but your illness exists.

While you must decide how a misdiagnosis affects you, I suggest you prioritize your health. The day you learn that your diagnosis was wrong is the day you begin looking for answers. Start with the doctor who told you the diagnosis wasn’t correct.

Ask why they believe the diagnosis was wrong and what the next steps might be.

There are more than 200 interstitial lung diseases (ILDs). Some can cause fibrosis. If you were misdiagnosed with IPF or another ILD, your pulmonologist may be able to advise you on the next steps toward a diagnosis. At that point, you have come too far to surrender.

If you have been misdiagnosed, I want to hear your story. You can share it here in the comments or join me in the Pulmonary Fibrosis News Forums. Sharing our experiences is one way to make every breath count.

Registration is now open for the PFF Education Symposium on Nov. 12 and 13 via Zoom.

Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.