This medical condition stumped doctors for years

One morning, Kyla Madonna Kenney woke up and her world was turned upside down: The room was spinning, she had a splitting migraine and one side of her body was shaking. Her tremors and migraine lasted for days. And for years afterwards, doctors would ask her: Did anything upset you recently? Are you stressed? Have you talked to a therapist about your anxiety? She underwent surgeries and took medications that were, in hindsight, unnecessary. It wasn’t until seeing Dr. David Perez https://researchers.mgh.harvard.edu/profile/1926181/David-Perez, a neurologist who is also a psychiatrist, that she finally got the right treatment for her medical condition, functional neurological disorder. Today, we dig into this disorder – what it is, why it’s so unknown despite being a top reason people seek out neurologists and what this condition reveals about the consequences of siloing medicine. If you liked this episode, check out our previous one about a new approach to brain health. http://lnk.to/byh7Vy Interested in more science behind medicine? Email us your questions at [email protected] mailto:[email protected]. Listen to every episode of Short Wave sponsor-free and support our work at NPR by signing up for Short Wave+ at plus.npr.org/shortwave http://plus.npr.org/shortwave. See pcm.adswizz.com https://pcm.adswizz.com for information about our collection and use of personal data for sponsorship and to manage your podcast sponsorship preferences. NPR Privacy Policy https://www.npr.org/about-npr/179878450/privacy-policy

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• 0:00Speaker 00

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• 0:16Emily Kwong?

  You're listening to Short Wave from NPR.

• 0:22Speaker 02

  October 8, 2016. That's when I woke up and everything changed.

• 0:27Emily Kwong?

  Kyla Madonna Kenny is a musician. And that day, she was supposed to sing at a wedding. But when she opened her eyes that morning...

• 0:35Speaker 02

  The room was spinning and I was shaking, but only on one side. And I had a migraine that was so bad, I felt like I couldn't even function. And I remember saying to my husband, something's really wrong with me.

• 0:51Speaker 02

  I somehow managed to get to the wedding. And I was singing the meditation songs. And in the middle of that one song, I felt like I was blacking out.

• 1:01Emily Kwong?

  Days later, the symptoms were still there. Tremors on one side of her body, her right side, that she could not control. And within her body, it felt like an electric current.

• 1:12Speaker 02

  It made me feel unsteady, like to walk, to see things. And the migraines came through where smell, sight, sound, touch, if anyone touched me, it would hurt.

• 1:27Emily Kwong?

  Kyla went to a doctor who asked her...

• 1:29Speaker 02

  Did anything upset you recently? Is there something that has caused you some anxiety? Have you talked to your therapist?

• 1:37Emily Kwong?

  But this didn't seem like anxiety. So she got a second opinion and a third opinion. She talked to so many doctors.

• 1:45Speaker 02

  I remember saying to one doctor, you're telling me that my anxiety is showing up on half of my body.

• 1:51Emily Kwong?

  Other doctors had other theories.

• 1:53Speaker 02

  Sinus infections, so they had me on antibiotics, a couple unnecessary surgeries. It had nothing to do with that. Ended up calling 911 because I was blacking out. They told me that I was anxious, anxious, anxious.

• 2:08Emily Kwong?

  For two long years. Until Kyla met someone who saw what she saw, David Perez, a neurologist and psychiatrist. The first day, she went to his office and described her symptoms. Dr. Perez said, do this for me.

• 2:21Speaker 02

  Put your hands out, and I did. I got my right arm shaking and my left hand was steady.

• 2:26Emily Kwong?

  And then he told her to focus her attention on her other arm, the one that wasn't shaking. With her steady hand, Dr. Perez guided her to start tapping her thumb and point her finger together.

• 2:37Speaker 02

  My right hand tremor stopped, like, immediately. And I looked at him, and I said, why did it stop? I said, you don't understand. I'm not faking this. I don't want you to think I've been faking. I'm not OK. And he said, I know what you have. This is functional neurological disorder. And I'm crying, and he said, we can help you. And I had never heard those words.

• 3:00Emily Kwong?

  The symptoms that come with functional neurological disorder, or FND, are one of the top reasons people visit neurologists at all. But it happens that the disorder is missed, even though it is more common than other neurological conditions, including ALS, or Lou Gehrig's disease, and multiple sclerosis.

• 3:22Emily Kwong?

  So today on the show, why everyone needs to know about functional neurological disorder, a disease often missed by medical providers that challenges our understanding of the brain-body connection. We speak with Kyla's doctor, David Perez. I'm Emily Kwong, and you're listening to Short Wave, the science podcast from NPR.

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• 5:11Emily Kwong?

  All right, I am here with Dr. David Perez of Massachusetts General Hospital Brigham and Harvard University. He is the person who finally recognized Kyla's symptoms for what they were: functional neurological disorder, or FND. Just to ease us all into what this disease looks like, I want to start with an analogy. So, David, if the brain is like a computer, what then is FND?

• 5:34Speaker 04

  Great place to start. One of the classic metaphors is this notion that the hardware is healthy, but the software is crashing. Another metaphor is this notion of brain-mind-body overload, that maybe at times when our brain circuits and our bodies reach certain thresholds of its capacity, that brain circuits become a bit scrambled and glitchy. When I talk to people about this, I'll highlight, is FND a neurologic condition? Yes. Is FND a psychiatric condition? Yes. Is FND a psychological condition? Yes.

• 6:12Emily Kwong?

  Wow, all of the above.

• 6:13Speaker 04

  But very importantly, each of those statements by itself in isolation is incomplete. You know, we try to put various diagnoses in buckets.

• 6:24Emily Kwong?

  Yeah.

• 6:24Speaker 04

  But what do you do when a given condition kind of violates those traditional conceptualizations of what a neurologic condition is and what a psychiatric condition is? And what's also critical is this lens. Of physical health meets mental health, of eroding these boundaries. This is something that's critical for many, many conditions. I just think FND is so striking in how it challenges this artificial dualism that we have in medicine and society that really doesn't serve our patients well and frankly doesn't serve science and clinical practice well either.

• 7:01Emily Kwong?

  Yeah, and when someone with FND has a flare up, just this onset of symptoms of dizziness or weakness or movement they can't control, like tremors, what is happening then in their brain?

• 7:11Speaker 04

  You can imagine with the hardware-software analogy, there are many ways to crash the system that at the end of the day might lead to an alert in your computer, right? We can sort of think about functional neurological disorder being a final common pathway of a glitchy brain. But how you got there, I think, varies patient to patient.

• 7:31Emily Kwong?

  Given that it does vary so much patient to patient, who then is at risk for FND?

• 7:36Speaker 04

  Yeah, that's where you want to think about biological factors, psychological factors, social, cultural, spiritual factors. The piece there that maybe I just want to spend a moment on to dispel

• 7:49Emily Kwong?

  Yeah.

• 7:49Speaker 04

  is this notion that childhood maltreatment or adverse life experiences are a definitive and required risk factor for the development of functional neurological disorder.

• 8:02Emily Kwong?

  Okay.

• 8:03Speaker 04

  That's not true.

• 8:04Emily Kwong?

  Yeah, fascinating. When I read about FND for the first time, I was amazed because doctors thought FND, they called it hysteria in an earlier time period. What have doctors thought FND was throughout time?

• 8:19Speaker 04

  It's a complex history. It's received many different terms and labels, psychogenic illness, medically unexplained symptoms, physical problems related to a wandering womb. The other framing that has been fairly pervasive is this notion of conversion disorder, the sense that there is psychological conflict.

• 8:42Speaker 04

  And then psychological conflict is being converted into physical symptoms with thoughts that if you addressed the psychological conflict, then the physical symptoms might resolve. So that's a really significant oversimplification. And both neurology and psychiatry have this shared origin story of an interest in functional neurological disorder. But as the history evolved, the fields of neurology and psychiatry separated. This separation, what it did was create a big gulf and a big gap for patients who kind of didn't quite fit into the lens of one discipline or the other.

• 9:21Emily Kwong?

  And it was a diagnosis of exclusion. Sometimes conversion disorder could be just the thing that's said when nothing else quite fits at certain moments in its history.

• 9:32Speaker 04

  That's right. That approach of a diagnosis of exclusion is not how we do it today.

• 9:37Emily Kwong?

  Yeah. What had to change in medicine for FND to finally be recognized?

• 9:43Speaker 04

  I think there's been a couple of pivotal things. One is this use of a rule and approach, that it's no longer a diagnosis of exclusion, it's no longer a medical mystery, that there are signs we can look for to diagnose this condition with confidence and clarity. The other pieces, too, were a removal of this notion that somehow physical symptoms, functional or logic symptoms, began in the context of a psychological stressor. It turns out, actually, now there's an increasing literature to suggest that oftentimes the trigger can be a physical injury.

• 10:20Emily Kwong?

  Yeah, a big shift. And I understand the work of Dr. Mark Hallett was pretty important to revolutionizing how FND was seen in medicine. I mean, among the many things that Mark Hallett realized was that when these patients were saying they didn't feel in control of their movement, of what was happening to their bodies, but showed no evidence of like a physical issue or a lesion in their brain or spinal cord, they weren't kidding. Like voluntary muscle movement can be interrupted in more than one way. He believed them. And that is a pretty brave stance to take as a doctor, to say, I believe these patients, even if we can't physically see the reason why they're having these tremors.

• 10:56Speaker 04

  Such a brave stance and really, really important, right? For a doctor, for a scientist to say, I see you, I hear you. And yes, Mark Hallett. Put on the map this notion that maybe one of the neuroscience themes that goes awry in patients with functional tremor and functional movement disorder is an abnormality in one's sense of agency or action authorship. We take for granted that when we move, right, closely coupled to our movement is this sense that I am the agent of that movement.

• 11:37Speaker 04

  So Mark Halit, Valerie Voon and colleagues, they observed that there were activation abnormalities in the right temporal parietal junction, and there were problems with how that brain area was talking to other brain areas, in particular, some basic sensory motor areas.

• 11:59Emily Kwong?

  Yeah, actually, I want to talk about activation abnormalities. And one of the tests for FND that really reveals this, the Hoover's sign test. Listeners should look it up because it's very hard to explain this test without seeing it, but it basically involves testing the strength of patients' legs. And if FND affects one of their legs, that leg is weak when it's directly tested, but when the strong leg is consciously tested instead, when the participant is told, like, okay, focus on your strong leg, the weak leg's strength temporarily returns, which is very cool. And I'm curious, David, what do you think this test reveals about the brain-body connection and what's going on with this condition?

• 12:40Speaker 04

  That tells you by leveraging a reflex that the basic pathways for motor control are intact.

• 12:49Emily Kwong?

  Yeah.

• 12:50Speaker 04

  And the notion here in functional neurological disorder is that the basic motor pathways are intact. But other brain networks are intruding and hijacking on those basic motor pathways. That's the framing biologically of a functional neurological disorder.

• 13:11Emily Kwong?

  That is such a clever way to diagnose FND because it is often been missed. FND was only added to the DSM in 2013.

• 13:20Speaker 04

  That's right.

• 13:21Emily Kwong?

  What do we know now about some of the best practices for treating people and caring for people who have this condition?

• 13:27Speaker 04

  The first step is making sure that the patient and the family members and other supports are really given some educational information about FND. And then when I think about FND care, what it really benefits from is thinking, do you have an expert on the neurology side?

• 13:47Emily Kwong?

  Yeah.

• 13:48Speaker 04

  That's weighing in on your examination.

• 13:50Emily Kwong?

  Okay.

• 13:50Speaker 04

  Do you have an expert on the mental health side that's weighing in on the context? And are they working together? There's an element of brain retraining and motor retraining. And that happens through physical therapy, occupational therapy, and speech and language pathology.

• 14:07Emily Kwong?

  Yeah.

• 14:08Speaker 04

  And then as we think about brain retraining, that's where skills-based psychotherapy, or what one form of that is called cognitive behavioral therapy, that's oftentimes coupled with with physical treatments, too. These are some of the things that I think are important.

• 14:27Emily Kwong?

  What I learned from David is that every FND treatment plan needs to be different because every person's case is so different. For Kyla, what has helped is a combination of things: meditating, knowing what triggers her symptoms, and doing cognitive behavioral therapy. There's a special kind of cognitive behavioral therapy just for people with FND. Talking to other people with this condition also helps. She and one of her friends call each other the F N divas. And because she's a musician, she's also shared her experience through song, giving a name to a condition that was once so mysterious to her, and a voice to her journey of finally being believed.

• 15:06Speaker 05

  But I was relentless. I had to fight for my life. No one could see the terror in me. I had to fight someone who would believe. I found a place. They listened to me. For the first time in my life, I am believed.

• 15:39Emily Kwong?

  Shortwavers, share this episode with a friend, a colleague, so that people who need this science-y goodness in their lives can join the Short Wave community. This episode was produced by Arundhati Nair. It was edited by our showrunner, Rebecca Ramirez. Tyler Jones, check the facts. I'm Emily Kwong. Thank you for listening to Short Wave, the science podcast from NPR.

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