Overview of This medical condition stumped doctors for years
This NPR Short Wave episode explores functional neurological disorder (FND) through the story of musician Kyla Madonna Kenny, who spent years being told her severe tremors, migraines, blackouts, and one-sided weakness were “just anxiety” before finally getting the correct diagnosis. The episode explains how FND works, why it has historically been misunderstood, and how modern medicine is changing the way it’s diagnosed and treated.
Kyla’s Long Road to a Diagnosis
Kyla’s symptoms began suddenly in 2016:
- The room was spinning when she woke up
- She had right-sided tremors
- She experienced severe migraines, sensitivity to light/sound/touch, and episodes of blacking out
- Multiple doctors dismissed her symptoms as anxiety or other unrelated issues
- She was even treated for sinus infections and underwent unnecessary procedures
For two years, she struggled to be taken seriously until she met neurologist and psychiatrist Dr. David Perez, who recognized the pattern as functional neurological disorder.
What Is Functional Neurological Disorder?
Dr. Perez explains FND as a condition where:
- The brain’s “hardware” is intact, but the “software” is glitching
- The problem involves disrupted brain-body communication
- It can show up as tremors, weakness, seizures, dizziness, movement problems, pain, and other neurological symptoms
Key point: FND is real, neurological, and not the same as faking.
A Brain-Body Overload Model
Rather than being a simple psychiatric issue, FND is described as a final common pathway where different stressors, injuries, or factors can lead to “scrambled” brain function.
Dr. Perez emphasizes that FND can involve:
- Neurological factors
- Psychological factors
- Social/cultural factors
- Spiritual factors
He also notes that childhood trauma is not required for someone to develop FND.
Why FND Was Misunderstood for So Long
The episode reviews the condition’s complicated history:
- It has been called hysteria, conversion disorder, medically unexplained symptoms, and other outdated names
- Older medical thinking often assumed symptoms were caused by psychological conflict “converted” into physical illness
- Neurology and psychiatry became separate fields, leaving many patients stuck between them
Historically, FND was often treated as a diagnosis of exclusion—something doctors said when they couldn’t find another explanation. That is no longer the modern approach.
What Changed in Medicine
The episode highlights several major shifts that helped FND become better recognized:
- Doctors now look for positive clinical signs instead of ruling everything else out
- Symptoms are no longer assumed to require a psychological trigger
- Physical injury can also act as a trigger
- Researchers and clinicians, including Dr. Mark Hallett, helped validate patients’ symptoms and advance the neuroscience of the disorder
One important idea is that patients with FND often have a disrupted sense of agency—their brain doesn’t properly register that they are the author of their own movements.
Diagnostic Clues: The Hoover Sign
One striking example is the Hoover sign, a bedside exam used to identify functional leg weakness:
- A weak leg appears weak when tested directly
- But when attention shifts to the other leg, the weak leg’s strength can temporarily return
This suggests that:
- The basic motor pathways are intact
- Other brain networks are interfering with normal control
How FND Is Treated
Treatment is individualized, but the episode highlights a few common best practices:
- Clear education for the patient and family
- Care from both neurology and mental health professionals
- Physical therapy, occupational therapy, and speech-language pathology for motor retraining
- Psychotherapy, especially skills-based approaches like cognitive behavioral therapy (CBT)
- Learning symptom triggers and building coping strategies
Kyla’s Recovery and Advocacy
Kyla says her symptoms are better managed through:
- Meditation
- Recognizing triggers
- CBT designed for FND
- Connecting with others who have the disorder
She also uses music to process and share her experience, turning a once-mysterious illness into a story of resilience and being believed.
Main Takeaways
- FND is common and often missed, despite being one of the top reasons people see neurologists
- It is more common than some well-known neurological diseases, including ALS and MS
- The disorder is real, treatable, and diagnosable
- Patients benefit greatly when clinicians believe their symptoms and use a multidisciplinary approach
- The episode underscores a broader lesson: the brain and body are deeply connected, and medicine is still learning how to treat conditions that cross that boundary
Notable Insight
“The hardware is healthy, but the software is crashing.”
This metaphor captures the episode’s central message: FND is not imaginary—it reflects a disruption in how the brain organizes and controls the body.