Dealing with a misdiagnosis

All right. In 2021, actress Christina Applegate was told she had multiple sclerosis. She was devastated and has dealt with debilitating symptoms ever since that diagnosis and even before it. So imagine the shock when doctors recently told her she was misdiagnosed. Here's Christina talking about that on her podcast Tuesday. She came into my room and she said, congratulations, you don't have MS. Congratulations. What does that moment feel like? so loaded i cannot imagine well i was like not happy at all yeah you know not everybody else was so happy i know when you told me i feel like my literal first words for you like you can dance again because that's just like where my head goes right because you don't get misdiagnosed and then all of a sudden i'm better right i haven't gotten better jamie yeah if anything i've gotten worse in some ways. And so I'm back at square one. Back at square one. Now that's from the podcast Messy, which Christina co-hosts with actress Jamie Lynn Sigler, who was diagnosed with MS while starring on The Sopranos. Okay, so let's bring in the doctors. How does this happen? And then how do you move forward with that? Dr. Deepti Suchi, a neurologist with Detroit Medical Center is here. Thank you for being here, doctor. Thank you. Let's just first talk about what MS is. What happens to your body? Right. So multiple sclerosis is a neurological disorder that affects the neurons that are in the brain and the spinal cord. And what it does is it slows the signals between the brain and the spinal cord and it causes a bunch of symptoms. And those symptoms can vary widely, right? They can be, I mean, I want to say somewhat minor for some people and than really extreme for others. That's correct, so some of the obvious symptoms are things like weakness in one part of the body, you could have vision loss, you could have numbness and tingling all over, but some of the other symptoms that can happen is problems like with language or speech, you can get things like where you have slowed thinking, like brain fog, and you can feel like just tired all the time, you know? So fatigue is an often common symptom. How is it diagnosed, and how often is it misdiagnosed? Right. So the diagnosis involves a wide criteria. So you would look at the patient themselves, which is the most important part. You can also look at the MRI. Now the MRI will show these spots in there, but those spots are a bit tricky. Spots on the brain. Spots on the brain and the spinal cord. And those spots basically highlight inflammation that's going on. The problem is, and the tricky part of what's happening is that those spots are very nonspecific, meaning that other diagnoses and diseases can also have similar looking spots. And that's how we get the misdiagnosis? Well, I think in this case, what happened was that, according to the publicly released information that Ms. Applegate had said, was that she has multiple spots on her brain MRI. However, what happened was in 2024, they released a new diagnostic criteria where they had, with better MRI imaging that's out, they were able to actually tell that there's a difference between the MS spots versus other types of spots in the brain. And I think that's what led to kind of that re-evaluation of, you know, is this multiple sclerosis or not? So we're getting better, we're getting more specific, but that probably doesn't make this any easier for her. How often is it misdiagnosed? Right, so that's a great question. So MS runs about a misdiagnosis of about 5 to 18 percent according to a 2024 analysis of a bunch of different articles and you would think you would be happy to be told you didn't have this autoimmune disease but as a matter of fact once you are in it and you're you have this community and you feel a part of something and you're advocating it actually seems to be quite devastating right you know it's very hard to be down this path for several years i mean we're talking about um treatments you know she was getting treated for this and then to all of a sudden being told no wait this is not correct and then having to pivot off of that I just can't imagine like the shock and the uncertainty that comes with that because she really is back at going backwards and looking at other parts of her what could be wrong with her doctor any ideas out there no I can't speculate you know she has a lot of neurological symptoms um you know numbness tingling that she talks about and she says that she sometimes can't get out of bed. And so, you know, they really have to go back and look through and see what other sort of, you know, diagnosis that could be. Yeah. Well, thank you for coming in. I know that it was really surprising. And again, you want to be happy for her. But again, this is just another difficult step for her. But we appreciate you, doctor.