Intro: Welcome to UAB MedCast, a continuing medical education podcast for medical professionals, providing knowledge that is moving medicine forward. Here's Melanie Cole.

Melanie Cole, MS (Host): Welcome to UAB Medcast. I'm Melanie Cole, and we're highlighting functional neurological disorder today with my guest, Dr. Victor Mark. He's the Medical Director of the Functional Neurological Disorder Clinic at the Spain Rehabilitation Center, and he's an Associate Professor at UAB Medicine. Dr. Mark, thank you so much for joining us today. Let's start out with a working definition. What is functional neurological disorder?

Dr. Victor Mark: It's a neurological disorder that's characterized by fluctuating control of voluntary activities, any voluntary activities that are conducted by the nervous system. So, what's typified by functional neurological disorder is that there is an off and on, basically kind of a disturbance while the person is awake.

Melanie Cole, MS: So, tell us a little bit about some of the latest insights into the diagnostic criteria and hallmark presentations of functional neurological disorder. How is it diagnosed?

Dr. Victor Mark: There is no standardized way of diagnosis. There have been several methods that have been developed and proposed over the last 30 years. But because there is a lack of agreement among these different systems, there is thus far not a gold standard. Therefore, I have developed my own way of diagnosis, which I think would align with many other clinicians ways of diagnosing this.

So, when I see a patient who is referred to me for possibly this disorder, what I will do is evaluate whether the particular patient's complaint may vary with self-attention to the kinds of symptoms. And I do that because the symptoms get worse when the patient becomes self-aware, self-directed in the problems. Whereas with distraction, the problem gets better. And so, this is highly important, not only for diagnosis, but also to come up with ways of management.

Melanie Cole, MS: Well, thank you for that. So then, let's talk about before we get into management, are there specific risk factors or patient demographics that seem more predisposed to this?

Dr. Victor Mark: There's not much known about this. For centuries, it has been noticed that this disorder, which has gone by a lot of other names, by the way. The functional neurological disorder term has only been hatched about maybe about 20 years ago. And what has been noticed is that this has been primarily a female disorder, though men can certainly acquire it also. It can occur at any age. There is a higher incidence of emotional disturbances or mood disorders among people with this disorder, but many people who have functional neurologic disorder don't have any mood disorder as well. I would say these are the best understood and recognized kinds of risk factors for this disorder. It can occur within a month or so after an injury, a physical injury for example. It can also follow a severe kind of emotional upset, but not always. And so, I pretty much rely on the fluctuation or variation of the symptoms in relation to the patient's self-attention and techniques that distract the patient from the symptoms that seem to improve the symptoms.

Melanie Cole, MS: What about the symptoms? Health complications are really something that can affect the quality of life for these patients. Tell us a little bit about that.

Dr. Victor Mark: What I see in the clinic are quite a wide variety of disturbances. Most often, we see are movement problems in which the patient can either have paralysis affecting one part of the body or conversely they can have hyperactive movements such as tremor. In addition, they may have imbalance when they are walking or otherwise have other abnormalities in their walking.

We can also encounter persons who have abnormal sensory symptoms as, for example, pain or tingling kind of sensations or ringing in the ears. Less often, at least in my clinic, are visual kind of disturbances. So, these are the more common kind of presentations. In addition, actually a large number of patients have what look like epileptic seizures. So, there's, well, a minute or so of out of control basically, rapid movements with sometimes lack of awareness or lack of memory for the event, and then it's over, but which doesn't occur with any kind of epileptic waveforms when the person undergoes an electroencephalogram at the time of the event. So quite often, these are called functional seizures.

Melanie Cole, MS: So Dr. Mark, tell us what treatment modalities you've found to be most effective for these patients and what does current evidence say about their efficacy?

Dr. Victor Mark: Most commonly used treatment is behavioral. So, I collaborate with a psychologist who is part of the clinic. And once I diagnose this disorder, I refer these patients to my partner psychologist and she will carry out six or seven sessions once a week for an hour each time or so to review when the symptoms occur, how distraction may help to improve the control and try to strive for better general health practices, such as good nutrition, good sleep quality, trying to maintain activity and come to acceptance of the kind of problems that the person may have, regardless of how severe the problems may be. This is the most widely used form of intervention. It is generally called cognitive behavioral therapy.

In addition, when there are movement problems, I refer patients to physical therapists and occupational therapists for their own techniques by which to try to control the symptoms. They go through a method called shaping in which patients are asked to conduct those kinds of movements that they can perform much more easily and without symptoms. And then, they graduate to more complicated kinds of movements where they may incur the involuntary movements. They are praised and urged into practice over and over. And in as few as five days, the symptoms can substantially improve.

So, when I refer patients, I usually involve a combination of psychological care and forms of neurological rehabilitation. Most often, physical rehabilitation or physical therapy, occupational therapy, and when needed, speech language therapy as well.

Melanie Cole, MS: Dr. Mark, is functional neurological disorder considered a mental illness or in that spectrum under that umbrella?

Dr. Victor Mark: I don't think so. Many clinicians as well as publications do allege that this is a mental disorder. The problem began about a 140 years ago when Sigmund Freud, the very famous doctor who started psychoanalysis and who came up with the theory of the repressed consciousness, observed patients with functional neurological disorder. And he deduced that quite often these individuals begin their problems from childhood trauma such as rape or other sexual violence or other forms of violence that they've then forgotten about it and then the problems surface later in life as these various kinds of involuntary disturbances.

That theory, which is called conversion disturbance, has become very widely accepted over the world. Despite that there's no proof of this, it has never even been tested. Unfortunately, this term, conversion disorder, is still being used even to this very day here as a medical diagnosis with its code for billing. And thus, this view that this is a mental disorder, which has also been recognized by the American Psychiatric Association, has led to this widespread consideration or acceptance that this is mental disorder.

However, one can find these kinds of functional neurological disorders in other kinds of widely recognized disturbances such as, for example, Parkinson's disease, dystonia, multiple sclerosis, for example, where no one alleges that there may be a mental disorder. So, what I've done in my publications is that I've drawn attention to the substantial overlap of the characteristics of functional neurological disorder in other widely recognized and accepted neurological disorders. Also, as I mentioned earlier, is that mood disorder is not always present in these individuals. And again, this implies to me this is not a mental disorder.

Melanie Cole, MS: Thank you for that comprehensive bit right there, because that's so interesting to me, the way that you describe this. Why are there so few physicians who are trained or otherwise have your expertise with managing functional neurological disorder patients living with this?

Dr. Victor Mark: Because of this legacy of functional neurological disorder as a mental disorder, let me add also that I forgot to mention that generally when persons who are diagnosed with functional neurological disorder undergo a typical kind of neurological workup, their brain scans don't show any characteristic kind of abnormalities. And so, for this reason, many clinicians assume that this is an imaginary disorder or it's made up or a mental disorder, as may be true for a variety of mood disorders.

In my own training as a neurologist, I was trained to regard functional neurological disorder as a mental disorder and something to laugh about. We viewed this as something that the patient could control could do best with psychoanalysis, and should not come under the care of a neurologist. And this is unfortunate the way that I was trained, and I see this is common now with other neurologists whom I see these days. And so, the recognition of the variety of evidence that functional neurological disorder is truly a brain disorder has been rather seldom recognized widely in the medical field.

I can refer in my publications though, that with experimental brain scans, not the kind that insurance will pay for, will nonetheless show that there are definitely abnormalities that don't occur in generally healthy individuals. The patients in my functional neurological disorder clinic have quite a number of what I call biomarkers, biological or organ disturbances that occur outside of the central nervous system. These include cardiac disturbances. They can have rapid heart rate, for example. They quite often have irregularities in their gastrointestinal system, either they have trouble with food being swallowed, or they have fluctuating and alternating diarrhea and constipation. Their skin often turns purple and is cold. And quite often, these individuals also have very flexible joints, particularly in the fingers that I've seen.

Because of these observations, this has shown to me that this is not a mental disorder. But in fact, it's a disturbance that afflicts quite a number of different parts of the body outside of the nervous system. In addition, there are a number of tests that are seldom performed, but which are reported in the research literature. And special kinds of brain scans can show abnormalities that are not shown in healthy individuals, and then again are very likely caused by certain kinds of physiological or structural changes in the brain. There are also abnormalities of blood tests that point to immunological disturbances as well. And finally, there are certain kinds of genetic backgrounds that are occurring in persons with functional neurological disorder that don't occur in typically healthy individuals.

Melanie Cole, MS: Dr. Mark, this is a really interesting topic. As we wrap up, speak to other providers about this topic, not everybody knows about it. So, I'd like you to, in your final answer here, address the stigma associated with it, both among patients and within the medical community. If you foresee the use of digital tools like telemedicine, if those are being used, and the multidisciplinary approach that you really find helpful at UAB Medicine.

Dr. Victor Mark: As far as telehealth, the psychologist with whom I work is very successful with her treating individuals remotely through the internet. In fact, that is her preferred way of treatment. Otherwise, though, I don't think telehealth would be appropriate for the kinds of disturbances that we see. For one thing, as a neurologist who will diagnose and evaluate functional neurological disorder, I do best when I see the individual in my clinic. I can conduct, therefore, a three-dimensional kind of assessment. And I can even do certain kind of assessments that include observing the person to stand up and walk around and maintain balance.

I'll do other kinds of tests that would take too long time to explain here, but which are best done with my laying hands on the patient. The same is true for people who apply neurological rehabilitation, thus with physical therapy and occupational therapy. For stigma, this is really unfortunate because it forces individuals with functional neurological disorder to be housebound. They are made to feel ashamed, even by their own family members. Because of the off and on kind of disturbance, they're often thought to be faking or pretending to have their illness, even though there's lots of evidence to show that this is not the case. They're often thought to be trying to evade any kinds of responsibility. They're very much embarrassed, so they avoid church and shopping, and other kinds of social environments. And it's widely thought that they have a mental disorder, and this is coming from the healthcare providers.

So, what we're trying to do here at UAB is we are teaching clinicians about this disorder, that it can be overcome through standard neurological rehabilitation techniques, as well as psychological counseling, and it can be improved. It is best approached with a multidisciplinary kind of approach. Thus, what we build into our program here is, after I have confirmed the diagnosis of functional neurological disorder, is to refer to a psychologist who is experienced with guiding the persons with the techniques that I mentioned to you earlier. Physical therapy, if there is a difficulty with moving the limbs or controlling the limbs and walking. Occupational therapy, if these individuals have difficulty with self-directed care, such as dressing, bathing or other kinds of self-care activities, and where indicated, speech language pathology evaluation and treatment. If, for example, they're having stuttering, or trouble with remembering words, I will refer patients.

And it's very important to note that there are quite often multi-organ kinds of disturbances. So, where it's worthwhile or necessary, I will refer my patients to a cardiologist, to an orthopedic surgeon, to an allergy or immunological specialist. We have a clinic on autonomic nervous system disturbance as well. And I'll refer patients to a gastroenterologist if there's a disturbance in swallowing or regulating diarrhea and constipation. So quite often then, I refer to quite a wide variety of medical specialists to try to improve the general well-being and health for these individuals.

Melanie Cole, MS: Thank you so much, Dr. Mark, for joining us today and sharing your incredible expertise on a topic that not everybody knows about or understands. So, thank you so much. And for more information, please visit our website at uabmedicine.org/physician. That concludes this episode of UAB MedCast. I'm Melanie Cole. Thanks so much for joining us today.