Geoff Bennett:
When actress Christina Applegate revealed earlier this week that she had been misdiagnosed with multiple sclerosis, it not only sparked an outpouring of empathy for her, but also raised important questions about how often people are told they have the disease when in reality they don’t.
Our William Brangham has more.
William Brangham:
Applegate was first diagnosed with MS five years ago after complaining of what became debilitating symptoms, including shooting pain, fatigue and difficulty walking.
On her podcast about living with what she thought was MS — the podcast is called “MeSsy” and is co-hosted by actor Jamie-Lynn Sigler — Applegate described the very moment she received this news from her doctor.
Christina Applegate, actress:
She came into my room and said, “Congratulations. You don’t have MS, Congratulations.”
Jamie-Lynn Sigler, actress:
What does this moment look like? So busy. I can’t imagine.
Christine Applegate:
Well, I wasn’t happy at all.
Jamie-Lynn Sigler:
Yes.
Christine Applegate:
You know, no – everyone was so happy.
Jamie-Lynn Sigler:
I know. When you told me, I felt like…
Christine Applegate:
RIGHT. Yes.
Jamie-Lynn Sigler:
My literal first words to you, you can dance again, because that’s exactly where my head is going here.
Christine Applegate:
Yes. RIGHT.
Jamie-Lynn Sigler:
You know what I mean? As…
Christine Applegate:
Because you can’t make a wrong diagnosis, and all of a sudden, I’m better.
William Brangham:
And Applegate is not alone. Statistics vary on the rate of diagnostic errors, but they range from 5% to one analysis estimating it as high as 40%.
To learn more about all of this, we’re joined now by Dr. Michael Kornberg. He is an associate professor of neurology at Johns Hopkins University.
Dr. Kornberg, thank you for being here.
It should be said up front that you are not Christina Applegate’s doctor. You have not reviewed his medical records. But we have to assume that she has plenty of resources and access to excellent care. How could this have happened? Is this common?
Dr. Michael Kornberg, Johns Hopkins Medicine:
You therefore mentioned the diversity of figures from various studies.
I would say that in a specialist clinic where you see neurologists experienced in treating people with multiple sclerosis, the number will be on the lower end of this estimate. But that still leaves about 5 to 10 percent of people diagnosed with MS who are later told it was an incorrect diagnosis.
In the majority of cases this is quite clear, but there is obviously a significant minority for whom this is not the case.
William Brangham:
And why? Why is MS so difficult to understand?
Dr. Michael Kornberg:
So there are some problems. The first is that it affects the brain and spinal cord, which are organs that are not easily accessible. We do not do biopsies for diagnosis.
There is no single test to tell if you have MS. There is nothing in your blood or spinal fluid that all people with MS have and all people without MS do not have. So it’s about having typical neurological symptoms and typical MRI findings of the brain and spinal cord, sometimes supplemented by other tests.
But other conditions causing neurological symptoms that can cause certain abnormalities on a brain MRI can be confused with MS and lead to a misdiagnosis.
William Brangham:
I know you’re not a psychologist, but I imagine it must be very shocking for a patient to spend many years thinking they have one thing, only to find out that it’s not what’s tormenting them.
Dr. Michael Kornberg:
That’s absolutely true.
Thus, the issue of diagnostic errors in MS has been studied. This is a topic we talk about in the MS community. And it’s very painful for people. I think Christina Applegate expressed all of this and all of these common feelings very well.
So when you’re living with chronic debilitating symptoms, it’s not – it’s not reassuring to be told you don’t have MS. What you are told is that the cause of your symptoms is not MS, but that you still live with it. That means it’s something else.
But you also lose the comfort that comes from just having a label for what’s happening to you, what’s going on in your body. This is very comforting for people, even if they are still living with symptoms.
And as she mentioned in her podcast, she became very close to the MS community. It has somehow become a part of one’s identity, which happens a lot, and it can be very painful when it’s taken away from you.
William Brangham:
Here’s another little excerpt from his podcast. This is – this is how she described where she is today.
Christine Applegate:
And so I’m back to square one and I don’t know what’s happening to me. And it’s going to be an online survey that my doctors are going to go into and just to find out, what’s happened since 2021? Why did this happen? I have all the symptoms of someone with MS, every single one of them.
William Brangham:
So if someone is living with this set of symptoms, or if someone is living with an MS diagnosis and hears this news and might not be sure what they actually have or if they’ve been misdiagnosed, what would you advise them?
Dr. Michael Kornberg:
Yeah, so, a lot of things we could say.
But, first of all, I think it’s important to say that although there is a minority, a significant minority of people for whom this is a problem, in the majority of cases it is a clear diagnosis. And so I don’t want everyone who is living with MS to think that, oh my God, I was probably misdiagnosed.
That said, a few other things we could say. First, if you have any questions, it’s obviously never a bad idea to get a second opinion. I think it’s a good idea if you have MS to be treated by a neurologist who has significant experience treating people with MS.
We can also say that there are some symptoms of MS that are very typical and others that you know, what we call non-specific and shared with other conditions. And Christina Applegate mentioned a few.
Fatigue, very common in MS, very common in other pathologies. Pain, very common in MS, common in others. And so, if you’re experiencing some of these less specific symptoms, if you feel like there’s something unusual or atypical about your presentation, your case, then it doesn’t hurt to get a second opinion.
It certainly doesn’t hurt to be open and honest about your concerns with your neurologist. A good neurologist should be able to tell you whether you have a simple case of MS or in cases of uncertainty.
William Brangham:
Dr. Michael Kornberg from Johns Hopkins, thank you very much for being here.
Dr. Michael Kornberg:
Thank you very much for having me.
Gn entert
