Narcolepsy and the Root of Misdiagnosis
The journey to receiving a narcolepsy diagnosis often resembles a rollercoaster, fraught with misdiagnoses. It can take a long time to get diagnosed correctly.
Since initiating my advocacy journey in 2020, I've become highly aware of how misdiagnosis greatly contributes to delays in obtaining a correct diagnosis. Misdiagnosis forces many to endure unnecessary years of trial and error before accurately identifying narcolepsy as the culprit. The question I have always had is...why?
Over time, I’ve come to believe that understanding the reasons behind misdiagnosis are crucial if we ever have hopes of decreasing the diagnosis delay rates.
Why narcolepsy gets misdiagnosed
Symptom overlapping
One factor that greatly contributes to incorrect diagnosis lies in the overlapping symptoms across a wide range of conditions. Symptoms like daytime sleepiness may seem to mimic conditions like depression or obstructive sleep apnea. Some doctors may be more likely to readily diagnose these before ever thinking of narcolepsy.
Awareness and education
Most people aren’t aware that lack of knowledge and understanding of narcolepsy isn’t exclusive to the general public. Not all healthcare professionals consider narcolepsy when encountering patients with fatigue and sleepiness, due to a knowledge gap.
Subtlety of symptoms
Specific symptoms like cataplexy are unique to narcolepsy but may not be present in all cases, which can end up complicating matters even further. For example, those with narcolepsy type 2 may never even experience cataplexy, and so can fall even more quickly into other categories.
Lack of specific tests
For me, how and when tests like the multiple sleep latency test (MSLT) are conducted, is one of the scariest things. That's because if a doctor decides that you do not need it, there may not be much you can do. But it could be the difference between a narcolepsy diagnosis or a sleep apnea/depression or a chronic fatigue one. And even when these tests are conducted, they may not be conducted immediately.
Misinterpretation of symptoms
Symptoms are sometimes attributed to lifestyle or mental health issues, overlooking potential sleep disorders.
Rareness
Narcolepsy's rarity, affecting about 1 in 2,000 people, means it may not be the first consideration by doctors.1
Let's diminish the prevalence of misdiagnosis
I sometimes look back and wonder if I would have been diagnosed on the first try, had I not researched so much prior to seeking medical help. I could also have easily lived another 13 years of my life undiagnosed.
This experience underlines the power of informed advocacy. Empower yourself with knowledge, advocate for your health, and together, we can diminish the prevalence of misdiagnosis. Your voice can catalyze change, inspire others, and pave the way for a future where narcolepsy is recognized and diagnosed with the urgency it demands.
Were you misdiagnosed?
Narcolepsy's underdiagnosis not only prolongs suffering but also exacerbates the emotional and physical toll on those of us living with it on a daily basis. I think early detection and treatment can be pivotal in managing symptoms and improving quality of life. By fostering better understanding and recognition of narcolepsy among both the public and healthcare professionals, we can close the gap in misdiagnosis.
Finding a diagnosis can feel like searching for a needle in a haystack, requiring persistence, patience, and sometimes quite a bit of luck.
Were you ever misdiagnosed? Share your experience with us!
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