The expert panel shares strategies for accurate clinical diagnosis of dyskinesia in patients with Parkinson disease and discusses how dyskinesia may impact the quality of life.
Daniel E. Kremens, MD, JD: Fernando, how often do you think dyskinesia is misdiagnosed? I have a lot of times when patients have called me up, and this was before the days of telemedicine when we could quickly jump on and take a look at them, and they describe these movements, and sometimes it was tough to figure out, is this dyskinesia or is it tremor? Because I think often patients don’t know the difference.
Fernando Pagan, MD: That’s exactly right, Dr Kremens. If we don’t teach patients the difference between a tremor and dyskinesia, it can often be misdiagnosed. Especially talking to patients, I think half the time when I was talking to them on the phone, they were telling me, “Dr Pagan, I’m having more tremor.” Then when I would see them in the clinic, they were actually having dyskinesia, a dyskinetic movement. That’s an important thing to be able to teach your patients about. Today with telemedicine, and everybody has a camera on their phone all the time, that could be something, patients can take videos to show you what it is they’re describing, whether it’s a tremor or dyskinesia. That’s something that has helped. But it gets difficult because we’ve often seen that patients can be having an OFF period and having dyskinesia as well, so they could be having tremor in one hand and dyskinesia in the other. That’s what makes dyskinesia so difficult to treat, that everybody thinks dyskinesia is always with high-dose levodopa, but it’s actually the fluctuations of the levodopa dosing. You could have bimodal dyskinesia, so patients when they’re wearing OFF also having dyskinesia. That can add another layer to it to make it difficult to be able to diagnose whether somebody is having a dyskinesia or tremor. For some very advanced patients, they can have both at the same time.
Daniel E. Kremens, MD, JD: We’ve focused today on peak-dose dyskinesia, but there is wearing OFF dyskinesia, and then the relatively rare bimodal dyskinesia, where you get it as both an OFF and an ON phenomenon. That brings up an interesting point. Why don’t I open this up to the panel? How do you guys screen for dyskinesia in your patients? Is it just they come in, and you look at them? If I’m honest, that’s what I do. We can see it and we’re trained for this, but for people who aren’t necessarily experts in looking at movement disorder, do you think there are certain questions you can ask or ways you can screen? Or do you find that patients spontaneously bring it up?
William G. Ondo, MD: There’s nothing better than looking at the patient. I do a lot of this, especially when there’s family around, “Is there much more of this, or are you having some of this going on?” The dyskinesia, I demonstrate it to them, if they are not showing it in the clinic. But it is a critical point to differentiate these two. The scenario that comes up with me is when a family member calls, because usually, we educate the patient fairly well on dyskinesia versus tremor. But sometimes a child will call, they’re visiting, and the patient is having dyskinesia, and they’ll frantically call, saying they’re tremoring all over the place. It is critical to not make any decisions unless you’re sure what you’re dealing with.
Robert A. Hauser, MD, MBA: I think you must be careful about what you’re seeing. Sometimes I’ll tell a medical student or resident, “You can’t believe your lying eyes.” Because you may see the patient there, and they may be slow and stiff and have tremor, and yet the patient’s complaining about movements. And you’re just seeing them in the 15 minutes when they’re OFF, but they may have hours of troublesome dyskinesia through the day, or vice versa. You must listen to the history and understand that patients vary in their response through the day, and try to ferret out what’s causing the issue. You may be seeing them at a time when they’re not experiencing the big problem. I will say I love and do exactly what Bill does. I try to imitate, “Well, do you get these kinds of movements,” this twisting, turning dyskinesia? I emphasize that tremor is shaking back and forth; chorea or dyskinesia is twisting, turning. That helps some, but to see it, ask the patient to take a little video and bring it in. Or ask the patient to take their medication while they’re in the office, and let you see them through a whole levodopa cycle. Those are some tricks you can use in the office.
Daniel E. Kremens, MD, JD: Bob, you mentioned “the big problem.” So, talking about the big problem, how do you think dyskinesia impacts quality of life in patients with Parkinson disease?
Robert A. Hauser, MD, MBA: It depends how severe the dyskinesia is. It is important to identify it, and then to ask the patient how it affects their activities of daily living and their function. Before I get into this a bit more, I already talked about the fact that OFF time and dyskinesia are intimately related, and many patients who have one also have the other. Before I go too far, I think one of the biggest problems with dyskinesia is that it limits our ability to treat OFF, and so we can talk about that.
Regarding dyskinesia itself, studies have shown that dyskinesia can and does impact activities of daily living and decreases quality of life in general. And you can see the patients when they have their dyskinesia, and do an examination, and watch them do their activities. The most important thing is to talk to them and ask how it affects them in doing their activities. You also must take the partner into account too. Often patients will say, “it doesn’t really bother me,” but it can drive the partner crazy because that’s the way we’re wired. We don’t like seeing this other person with all this movement, so that’s important. Also, it’s the way individuals are perceived, if they’re working or deal with others, whether it’s recreationally, etc. All these things come into play. But the most important thing is that in general, studies have shown that dyskinesia can and does have an effect on quality of life and function, and it interferes with our ability to adequately treat OFF time.
Rajesh Pahwa, MD: I think an important thing we need to bring up is that some patients can have agnosia of their dyskinesia, that even though they are dyskinetic, they don’t realize they are dyskinetic. Now, why this happens, because maybe in some patients they have predominantly right hemispheric symptoms, we do not know. But there have been studies that have videotaped patients and then shown them the video, and the patients are surprised how dyskinetic they are. Similarly, patients might be falling out of the chair and they may not say that this is bothering them. But we must dig deeper once we see the patients with the dyskinesia because at times they’re not sure, is it the dyskinesia affecting them, or is it when they have the Parkinson symptoms, ie, they are OFF, that is affecting them? That can also be another challenge. Often, like Bob brought up, the caregiver might tell you, “he can barely eat when he’s dyskinetic,” or whatever it might be. Another thing I see with dyskinesia is pain. Some patients can have pain with the dyskinesia, and the other thing is balance and falls. Those are challenges that patients with dyskinesia can have. But I think one of the things we often ignore is the agnosia that patients have.
Daniel E. Kremens, MD, JD: I also think it contributes to weight loss in Parkinson disease. Thin patients are already at risk for getting dyskinesia, and then they’re burning so many calories from their dyskinesia that they’re losing more weight.
Transcript Edited for Clarity