Functional Neurologic Disorders: Falling Through the Cracks

“Should the neurologist be primarily responsible for taking care of patients with functional disorders?” This was one of the questions debated during this year’s Controversies in Neurology plenary session at the 70th Annual Meeting of the American Academy of Neurology in Los Angeles from April 21–27.

Previously preferentially labeled “conversion disorders” or “psychogenic neurologic disorders,” there has been a recent shift towards embracing the term “functional neurologic disorders,” which no longer requires the presence of a psychological stressor as diagnostic criteria per DSM-5, the Diagnostic and Statistical Manual of Mental Disorders.

Functional neurologic symptoms, including tremor, jerky movements, weakness, non-epileptic spells, problems with gait and balance and cognitive complaints, are among the most common reasons for patients to seek out a neurologist, although their true prevalence remains ill defined. Patients with functional movement disorders (FMD) have been reported to represent between 2–20% of patients in movement disorder clinics, and patients with non-epileptic spells make up around 30% of referrals to epilepsy monitoring units for refractory seizures. While often labeled as “non-neurologic,” “medically unexplained” or “psychiatric” in etiology, recent studies have demonstrated changes in structural and functional neuroimaging in FND patients, involving areas involved of emotional and motor planning like amygdala and supplementary motor areas. These findings are potentially indicative of brain changes predisposing to loss of agency over normal movement control, and blur the distinction between “neurologic” and “psychiatric” etiologies of FND.

There is no question that neurologists are playing a crucial role in diagnosing FND by obtaining a detailed history and providing an objective examination of neurologic function, which often allows a diagnosis based on positive features such as distractibility and variability of findings that are non-congruent with other neurologic disorders. While additional diagnostic tests such as video-EEG are confirmatory in making a diagnosis of non-epileptic spells, it is important that the diagnosis of FND should be made based on positive features and not as a diagnosis of exclusion. The neurologist’s expertise is therefore crucial in distinguishing a patient with a functional disorder from a mimicking disorders with similar presentation.

Dr. David Perez, assistant professor of Neurology and director of the FND Clinic and Functional Neurology Research Group at Massachusetts General Hospital in Boston, argued for a primary role of the neurologist not only in diagnosis, but also in management of patients with FND.

Dr. Perez argued that treatment of FND should start with a detailed explanation of the condition by the neurologist, informed by our current understanding of FND, and aided by demonstrating exam findings that supported the diagnosis. Neurologists should then devise an individualized treatment plan which may combine psychotherapy, physical and occupational therapy, and medical treatment for comorbid depression and anxiety, while continuing to follow patients long-term to guide and monitor treatment efforts. It is also worthwhile to mention that a subset of patients may have concurrent epileptic and non-epileptic spells, and a recent study by Wissel et al. reported on patients with functional Parkinsonism developing Parkinson’s disease at a later time.

Arguments against a primary role for neurologists in the care of FND were made by Dr. Andrea Haller, neurologist at Fort Wayne Neurological Center in Indianapolis. Some of her concerns were the already high demands on neurologists’ time, especially in a private practice setting, that would be further challenged by taking on coordination of care of FND patients. Secondly, she stressed her view of FND as a primary psychiatric condition, while acknowledging difficulties in identifying mental health professionals with FND treatment expertise.

While these positions initially seemed worlds apart, further discussion clarified more similarities than differences in the approach to patient care in practice, which ideally should include a team approach to address both physical and psychological aspects of the disorder.

At our center at the University of Louisville, we have embraced a multidisciplinary model for assessment and treatment of patients with functional movement disorders. Patients are seen in a multidisciplinary clinic in the outpatient setting by a movement disorder specialist, physical therapist, psychologist and a case coordinator. This allows our team to provide a comprehensive evaluation, patient education and treatment recommendations.

We have recently reported on the initial experience with our approach and highlighted the unmet need of specialized care for FND, reflected by referrals to our clinic from 25 US states. Patients often express a high degree of dissatisfaction with their experience in the healthcare system in relation to their diagnosis of FND, feeling stigmatized and abandoned by previous medical providers, and almost universally having difficulties in accessing treatment for their condition.

A glimmer of hope is emerging by the growing interest in functional neurological disorders by neurologists and psychiatrists alike, as evidenced by the AAN’s topic selection for this year’s program selection. Several courses on diagnosis and treatment of FND were presented throughout the program and had a high attendance rate. This interest in FND is encouraging and suggests a brighter future for this field in terms of access to care for this underserved patient population. Hopefully, more dedicated funding for research and investment in defining best treatment approaches will follow.

At the core of this controversy remains the incomplete understanding of FND in terms of risk factors, pathophysiology, best treatment approaches and long-term outcomes. The emerging data from research supporting a bio-psycho-social model for FND gives hope towards a better understanding and available treatments for FND over the next years. Knowledge about the underlying neurobiological factors could inspire more neurologists to take on a primary role in management of FND alongside other healthcare professionals. In turn, we could see a reduced time to diagnosis, lower costs on health care systems, and most importantly, improved patient outcomes and higher patient satisfaction with care.

Dr. Kathrin LaFaver is an assistant professor of Neurology at the University of Louisville, Louisville, KY.

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