Is your asthma… asthma?

In my time connecting with those with asthma, I’ve also connected with people who have been misdiagnosed as having asthma, when in reality another condition was actually causing their breathing issues. Some people embrace this change, and others fight their re-diagnosis—after all, it would not be an easy transition, nor would it be easy to believe a new diagnosis is correct if an initial diagnosis was not. A friend with “asthma” (AKA not asthma!) was diagnosed by an Ear Nose and Throat specialist as being “the poster child for vocal cord dysfunction.” She embraced her re-diagnosis of the cause of her breathing issues, and was able to ditch her inhalers and control her VCD by learning breathing exercises and reducing stress in her life. She never let asthma stop her, but, she’s thrilled to have received a correct diagnosis. Unfortunately, many people don’t embrace their new diagnosis as readily, and spend more time treating the wrong condition.

What the research says about asthma misdiagnosis

In one study, a third of people diagnosed with asthma do not actually have asthma at all. 1 Because asthma has so many different presentations—symptoms, severity levels, and in short, phenotypes!—it can be difficult to make an accurate diagnosis. 1 As well, there are two-dozen plus “masqueraders” of asthma. 2 These include not only  vocal cord dysfunction but also heart failure, cystic fibrosis, pulmonary embolism (blood clots in the lung), and pulmonary hypertension 2,3 to name a few conditions that can be misdiagnosed as asthma—since after all asthma is common and easy to diagnose—but perhaps less easy to accurately diagnose. 3

Getting asthma right

How do you make sure your asthma diagnosis is correct? Since in the above study a third of asthma cases were misdiagnosed, you can be reasonably assured your asthma is indeed asthma. However, if you are unsure, bring this up to your doctor. They can make other referrals or consider other tests to do to make a more accurate diagnosis—or confirm your asthma—such as pulmonary function testing, bronchoprovocation tests (tests that try to induce asthma symptoms/bronchospasm and include pre- and post-test spirometry—lung function tests—by triggering symptoms using a chemical called methacholine, cold air, exercise or histamine), or by ruling out other asthma masqueraders. Because everyone is different, your doctor is the best person to point you toward how to solidify your asthma diagnosis.

If your diagnosis changes

I have not been in this boat personally. However, I have known many people who have learned that they do not have asthma (or have milder asthma than they’d initially thought and co-existing diagnoses). Many (shockingly to me!) were not happy with being “undiagnosed” for whatever reason, even after decades. My friend who learned she had VCD and not asthma embraced that change—she took the right steps with her doctors advice, learned about VCD and what triggers it, and stopped her asthma medicines. She has had a significant increase in quality of life by treating the right condition. Others have been more resistant to changing the “asthma” part of their lifestyle. A diagnosis alteration can be tough: if you were mistakenly diagnosed with asthma and indeed have a condition like VCD, anxiety, pulmonary hypertension, or another masquerader, speaking with a therapist or mental health professional may help you to adjust to and process this change so that you’re able to move forward and be as healthy as possible!

Have you been misdiagnosed with asthma when it was something else? Has someone you know? Share that experience in the comments.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Asthma.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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