Neha Pathak, MD, FACP, DipABLM: Welcome to the WebMD Health Discovered podcast. I'm Dr Neha Pathak, WebMD's Chief Physician Editor for Health and Lifestyle Medicine. Did you know that multiple sclerosis affects nearly one million people in the United States? That means many of us know someone who has been impacted by this life altering disease.

MS is also one of the leading causes of disability in young adults, with the average age of onset being in your mid-thirties. Today, we're taking a closer look at multiple sclerosis, a complex and often misunderstood condition. We'll explore the early warning signs of MS, then unpack the risk factors, like having a genetic predisposition, exposure to the Epstein Barr virus, smoking, and discuss the groundbreaking treatments that are transforming the lives of people being diagnosed with MS today. 

We'll also touch on the journey to diagnosis, the different types of MS, and the critical role of lifestyle interventions, whether you're newly diagnosed, supporting a loved one, or simply curious, this conversation promises to shed light on a condition that's touched the lives of so many.

First, let me introduce my guest, Dr Michael Levy. Dr Levy is an Associate Professor of Neurology at Massachusetts General Hospital and Research Director of the Division of Neuroimmunology and Neuroinfectious Disease.

Welcome to the WebMD Health Discovered Podcast, Dr Levy.

Michael Levy, MD, PhD: Thank you for having me.

Pathak:Before we jump into our conversation, I'd love to ask about your own health discovery and particularly around questions that your patients are asking you.

Levy: Well, I would say the number one question patients ask me is why did I get multiple sclerosis? Why me? Why did I was perfectly healthy living a normal life and then this suddenly happened to me? Why did it happen? That's probably the most common question I get.

Pathak: So we're going to dig into all things multiple sclerosis, but first, can you help us understand and define what multiple sclerosis is?

Levy: Multiple sclerosis is an immune mediated condition in which the immune system attacks the central nervous system, and that includes the brain, the nerves behind the eyes called the optic nerves, and the spinal cord. And each time the immune system attacks, it causes damage, and that leads to neurological disability in that particular neuronal tract.

So we could talk about how attacks of the optic nerve, For example, would cause vision loss and attacks of the brain can cause cognitive problems and attacks in the spinal cord can cause mobility problems. And then this accumulates over time, and it leads to accumulating disability and often patients end up in wheelchairs if they're untreated and this can progress over 15 to 20 years.

And it's a fairly common condition affecting about 1 in 1000 people in the US. So most people know at least one person with MS.

Pathak: Can you help us understand a little bit about what this journey looks like before someone comes to you either with a diagnosis of multiple sclerosis or they want more information, they're really thinking about the treatment plan, but can you help us learn a little bit about what that person's life is like before that point?

Levy: So before that point, it could be completely normal, or there could be small things. That were minimized things like often I'll say, did you ever notice in the past that maybe for a week or two, you'll have some numbness in one leg, or maybe some clumsiness in one hand or another, and often patients will say, Oh yeah, that did happen.

But, you know, I kind of minimized it or it wasn't very severe, and it went away anyway on its own, or by the time I got to the doctor, it was gone. And so, we'll often hear that. And those are signs that things have happened in the past. And usually, it's some severe event. Often in the optic nerve or the spinal cord, because it's affecting vision or mobility, that finally brings them to the attention of a neurologist.

Pathak: That's really helpful in terms of sort of this hidden journey that a lot of people feel like they're on before the clarity of having a diagnosis. Can you talk a little bit about the different types of MS? So as you mentioned, it can be a decades long journey, but then there's also different types that someone might be experiencing. Can you help us understand those types?

Levy: Yeah, the types, are very simply relapsing remitting, which is by far the most common. 70-80 percent of people have this one, which is where the immune system attacks, and then it retreats, and then there's a healing process, and then it attacks again, and retreats. So each attack is, is a relapse, and each healing period is, is a remission.

And so this is called relapsing remitting disease. There are other forms of MS, immunologically different. We're not exactly sure. But there are other forms where there's just a progressive decline in function. This is called primary progressive MS. Where it's not discrete attacks that come and go, but it's just getting worse and worse and worse over time.

And it still seems to be mediated by the immune system attacking the central nervous system, but it's just constant. That's called primary progressive and then there's a third type where after many years of a relapsing remitting course The healing process is not complete The disability continues to accumulate even outside of discrete attacks And that kind of happens at the end of the course after many years of attacks And again, we're not sure what the immunology underlying each of these processes Um, types of MS is we're not even sure that they're all one type of disease, frankly. 

Pathak: So then it brings me back to our first question about your health discovery around this, entity or these different entities, with regard to what puts people at risk for developing MS?

Levy: So in my division, we're interested in why the immune system goes awry and what environmental risk factors can trigger that in particular, the Epstein Barr virus. So there was a wonderful study that showed that in order to get MS, you had to be exposed to the Epstein Barr virus. Now you may say, well, and it's true that 95, 97 percent of the world is already exposed to the Epstein Barr virus.

But what this study showed is that prior to being exposed to the Epstein Barr virus, there was no MS. And then if you did get MS, It always followed an infection with the Epstein Barr virus. And so that was really strongly conclusive that the Epstein Barr virus was at least involved in triggering the disease.

And now we're looking at the role of the virus in, in fact, driving the disease and in causing every attack and maybe even in Causing the long-term disability. So our interest dates back to, just a few years ago when that discovery was made and there are other risk factors also related to the Epstein Barr virus.

There's a genetic susceptibility gene, which can predispose to multiple sclerosis. If you have one copy of the gene, your risk of MS is about three times higher than the general population. And if you have both copies of the gene, you inherited one from your mother and one from your father, your risk is almost seven or eight times higher than the general population.

And this susceptibility gene is involved in how your immune system reacts to the Epstein Barr virus. So, number one, the virus, number two, the genetic susceptibility, then there are other risk factors like smoking and obesity that might be contributory, we're not exactly sure how.

Pathak: You bring up an interesting point. I think it's really important in terms of where the science has gone with regards to helping us understand this infectious trigger for this autoimmune condition. And I think after COVID, we have a lot of interest in some research. Parts of the population where they want to know, okay, do I have this virus?

Have I ever been exposed? Is this active in me? So how do you talk to folks about a virus that is really ubiquitous? and really, as you said, over 95 percent of the world's population has been exposed or had it, how do you talk to people about the utility of checking for it?

Levy: Well, it's not really worth checking for it because almost certainly you're going to be positive unless you're in that tiny 3 percent, in which case we can definitively rule out MS. the way I explain it is that Epstein Barr virus belongs to a family of viruses. Herpes viruses that often live within people, and it's not just Epstein Barr virus.

There's also cytomegalovirus. There's human herpes virus 6. There's the varicella zoster virus that causes chickenpox. All of these viruses live within us, and we've evolved to live with these viruses for over a million years. And so there might be some positive benefit in maintaining this infection in our bodies.

We're not exactly sure. We've talked about immunizations. To prevent these infections from occurring, but we're wondering, well, what would that predispose us to if we've evolved with these viruses for a million years, and suddenly, we don't let them into our bodies. What's that going to do? Maybe the, the viruses are good for us in terms of fighting off cancers or preventing infections from some something else.

So we're not exactly sure what it would do it if we're not infected with these viruses. So I put it in the context of we've evolved with this. This is kind of normal, and the virus infects so many other people that don't have MS, that we think there's got to be something else.

Not just the genetic background, not just the infection with the Epstein Barr virus, but there must be some other environmental trigger that finally tells the immune system, okay, you have to react to this, and then it causes MS. 

Pathak: So, we were talking a little bit about how ubiquitous the inciting, the triggering virus is, and all of these other factors that might play a role in the inciting event for starting MS. I'm curious how are you noticing? Are you seeing trends of more people the prevalence of MS increasing over time? Are we seeing that? with regard to MS populations

Levy: I would say we're seeing them earlier because of the ubiquitousness, the availability of the MRI scanner, which can pick up, lesions even before patients know that they have MS. So we've had people get MRIs for migraine headaches or, after car trauma, car accident or something like that.

And we'll see evidence of MS. And so they'll come to my clinic and they'll say, MS, what's that? I haven't had a single symptom yet. And I'll say, well, we can already see it on the MRI. And then sure enough, when we do testing, we'll get into the testing, how we diagnose it. But on the testing, it sure looks like they either have MS or they're going to develop it.

So, we're, we're seeing people earlier and earlier in the course.

Pathak: So you started us off with regard to MRI findings. Can you talk us through what you do to diagnose it definitively in someone?

Levy: Well, MS, multiple sclerosis, as the name implies, is due to multiple sclerotic lesions. These are scars in the brain, and they're scarred, on autopsy, so if, when a patient passes away, you take the brain out and you see all these little scars, and those scars are already visible on the MRI scanner while a patient is alive.

Every time the immune system attacks and then it, and then the damage is, is healed, it leaves behind a little scar. And you can see those on the MRI and you can see them accumulating over time. You can also, with the contrast dye that's injected towards the end of the scan, you can also see if a lesion is currently inflamed.

And that lesion has just occurred. The immune system is in the process of invading. There's some swelling. There's some damage going on there. And then that's eventually going to scar down. So we can see all of that on the MRI.

Pathak: When you say healed lesions, does that mean that there is full recovery of function after the lesion has healed itself? Or do you all, are you always going to have a residual sort of loss of function after one of these sclerotic attacks?

Levy: Could go either way. Usually, younger people do heal better. Usually early in the course of the disease the lesions heal better. But we had some people who after every attack There's some residual dysfunction and it never heals completely. So we're not exactly sure why that is and why some people do heal very well.

But it's pretty variable and there's really no predicting it. Some patients may have an attack and I'll look at it and I'll say, oh, I think this should heal and it doesn't. And sometimes, people have really bad predictions. Big severe attacks that land them in the hospital for a few days and they recover a hundred percent. So there's really no way to predict.

Pathak: And is that the case in an individual? If you are the kind of person that, seems to be having difficulty recovering. Is that something that's likely to going to that signifies something for the prognosis of your course, or you could react differently even in yourself, like one lesion you might recover well from and another, it might take you more time?

Levy: It's totally random within the same person, they may have several attacks that they never noticed. They may have several attacks that they've recovered completely from, and they may have several attacks that left them with some permanent disability. And there's really no way to know and to predict that.

Pathak:. So it's interesting with so many different ways of presenting, with so many different sort of pieces that may play a part in your risk factors, with so many different possibilities for recovery. I imagine that you're also dealing with a lot of myths and misconceptions amongst your patients.

So what are some that patients come in with and what are some that you'd like to dispel today? 

Levy: After patients are diagnosed with MS. They tend to really focus on MS and they think that every symptom is due to MS. And while many neurological symptoms can in fact be due to MS, generally our treatments are really good now. And so once patients start treatment, we can prevent MS. future lesions very, very well.

And so when a patient comes in, they'll start a treatment, we're preventing all future lesions, but then they'll still have some of their symptoms from the past and they think the medication's not working, but that's wrong. The right way to think about these medications is that you're not having any new damage, but all of those old scars, they're still causing problems once in a while.

And these medications that we have, they don't do anything for the old damage. They're just preventing new attacks from occurring.

Pathak: So then talk us through some of the treatment options. what has changed? What brings you more optimism? What makes you excited about the treatment of patients with MS? 

Levy: We have more than 20 FDA approved treatments for multiple sclerosis now. They started off in the 90s all the way through very recently. These medications are now extremely effective at not only preventing new symptoms from occurring any new changes on the MRI, but they also tend to prevent any disability even from the damage that was done in the past of these patients are now no longer progressing. And so we call these treatments the, very effective or highly effective medications. And they're also very tolerable. So, if you think about the risk and the damage done from all of these attacks over time, and you compare that to the risks of these medications, it's just such an imbalance towards treatment.

There's no doubt in my mind, if I had MS, I would go on one of these highly effective medications because they're wildly effective at preventing, new attacks, but they're also extremely tolerable and very safe.

Pathak: And then how do you differentiate your treatment options for someone that has relapsing remitting versus progressive versus secondary progressive

Levy: So I should have clarified that all of these drugs are primarily targeting relapsing remitting disease. There are a couple of drugs that are also approved for secondary progressive MS, and even for primary progressive MS with the assumption that the immune system is still involved. In an active way, meaning on the MRI, you can see that contrast dye leaking in certain circumstances, and that indicates to us that the immune system is active and that treating the immune system can then prevent ongoing disability from, progressive MS.

So they're really still all targeting the immune system. And as long as the immune system is active. We can shut that part down.

Pathak: And can you talk a little bit about some of the symptoms that happen in patients? So we're seeing many, many more periods of extreme heat and heat can be an exacerbator for MS symptoms. So can you talk a little bit about that and how do you counsel your patients given this sort of new phase of the world that we're going through where we're seeing more and more extreme heat

Levy: That's right, so when MS was first, understood back in the 1860s, there was a famous doctor named Charcot, and he would go around France lecturing about MS, and one of the things he would do is he would demonstrate the sensitivity to heat. He would bring up a young lady with MS onto a stage, He would examine her, she would be neurologically more or less normal, but then he'd put her in a hot bath, and it would get very steamy, and she would warm up and then repeat the examination on stage in front of all these neurologists.

And then her symptoms would emerge. And so that heat sensitivity has been around for more than 150 years now, and the important thing to know about that is that even though heat makes your MS symptoms worse, it's not causing any damage. It's not triggering inflammation. It's just exacerbating the function from those old lesions.

So if you think about it as, a dysfunctional nerve that's really trying its best to function even after the damage was done, if you apply heat in that context, it just makes it even harder for that nerve to function and it'll malfunction sometimes, but it's not due to new damage and it's completely harmless.

Pathak: And how long does it take to recover after, if heat is the reason for your worsening symptoms?

Levy: As soon as the body temperature goes back down. Those symptoms should resolve and one of the ways that we've been managing this so that people don't have to stop what they're doing when they get hot is cooling vests. So you can go on Amazon, you can see all these different kinds of cooling vests, some you keep in the freezer, some have circulating water, some have fans built in and what it does is it just keeps your body temperature down at a stable level and it prevents this overheating from occurring so you can go outside. You can hike your 10 miles even in the heat and hopefully not have those symptoms emerging.

Pathak: I think it's been really helpful to talk about treatments, to think about flares. I'd love if you could give some more advice around things like we just talked about, like exercise. For a lot of people that is important, not just for their physical health, but their mental health.

So can you talk a little about some of the lifestyle interventions you talk to patients about? 

Levy: Absolutely the lifestyle interventions that have been shown to be effective in MS reducing 30 percent is going from obese to normal body weight. That's number one. Quitting smoking, also a 30 percent reduction. So those two things are super easy. So anybody who's obese or smoking, I counsel them to treat those because there's a concrete, effective, benefit to doing that.

But even for people who are in good shape or, normal body weight or who are not smoking, an active lifestyle is beneficial. One of the things I remind my patients about is MS doesn't really kill you. But heart disease and cancer do. And so it's not only about your MS, you have to stay in good shape.

You have to continue getting all your cancer screenings. You have to watch your cholesterol and do all the things that normal people have to do to stay healthy and that includes maintaining a healthy lifestyle, good diet, good sleep habits and lots of exercise.

Pathak: It strikes me as you're talking to that often the advice that's most necessary is the hardest to do and we're feeling poorly. So what are some of the tips or what's your advice for folks, you know, particularly when you have MS and you have the symptoms of brain fog or fatigue or the mental health impacts.

How do you help people cope with those issues? And do some of these positive behaviors that are going to be helpful for the whole health of that person.

Levy: As you said, that is the hardest part about treating MS. So fatigue, depression, and cognitive function, those are not treatable with the usual MS medications. that requires a whole separate line of treatment. And even people who have fairly well controlled MS will still develop depression.

And it's not grief. It's not, oh, I'm depressed because I have MS. No, it's a biological imbalance that's caused by MS. And so it often requires medication and psychotherapy and everything else that people with depression from other causes will require. The fatigue element is very challenging because if you're fatigued, you're not going to exercise.

And if you don't exercise and you decondition, and that just makes you more tired when you do try to exercise. And there've been many trials of stimulants and other medications to try to deal with fatigue. And all of them have their pros and cons. We tend to approach it as a trial and error, where we try something like a mild stimulant, to try to boost your energy to try to get you to exercise more and then hopefully that increased exercise builds your endurance again and makes you a little bit less fatigued.

But it is a major challenge and nobody should feel like there's really something wrong with their MS if they're feeling fatigued, depressed or have cognitive fog. It's a very common consequence and it's not an indication that the medications are not working.

Pathak: This has been just such a helpful discussion. I'd love if you could share some of your final thoughts on how you can live well with MS with regard to other things we haven't talked about, assistive devices, do you have recommendations about ways to connect with others, so that you have a support network around you. I would love some of your key action items.

Levy: First of all, I always encourage my patients to live as normal of a life as possible. Continue working, continue parenting, continue doing what you enjoy doing, try to live as normal of a life as possible, and we'll target your immune system to enable that. And a lot of that involves, family support, not just from, spouses and loved ones, but also from employers. So, we sometimes have to ask for accommodations. Maybe it's a vision problem. Maybe it's mobility. Maybe it's fatigue and asking the employer to work from home one day a week. Whatever it is, try to make that happen because we really want people to live as normal of a life as possible.

There's also a wonderful community of patients and, and doctors on the National Multiple Sclerosis Society website and organization. And they have a great, education, piece with lots of videos to explain some of the things that we just touched on.

Pathak: You've given us so many great action items, so many great tips, I'd love to just end on your advice for those folks that are newly diagnosed that have maybe potentially been diagnosed because of some other reason. What are some of the things that you advise people from the very beginning?

Levy: Well, the first thing I say is I say, don't read anything 10 years old. This field is rapidly evolving, most of these highly aggressive medications that I told you about, the highly effective ones, they've only been out for about seven to 10 years. And so, if you look at that data in particular, people who are on these very effective medications, life looks pretty normal.

In fact, the fellows in our clinic, they tease me about, patients who come in who are on these highly effective medications because it's very boring. Patients come in. How are you doing? Fine. Anything new? Nope. Exam? Stable. And they're very boring. And it's good. It's good to be a boring patient.

And most of our patients are boring now because we have these highly effective medications. And so if you're just being diagnosed and you're thinking to yourself, I don't want to be in a wheelchair. You're probably not anymore. Those days are over. I mean, we used to have 70 percent of our cases used to end up in a wheelchair back in the 90s when I was training, and now it's less than 25 percent.

And that's really due to these medications. And we're only getting better at doing this. So there's still many trials ongoing, many different approaches. So not just the same old type of drugs, but many new ones. you may have heard of these cellular therapies that are called CAR-T cells that are being developed for cancer.

We're now using them in MS and in other autoimmune diseases. So I would say that if you're worried about your future, this is a good time to have MS because we have really good treatments already and many more to come.

Pathak: Thank you so much for being with us today. We've talked with Dr Michael Levy about all things multiple sclerosis. From the long journey to diagnosis, to living well with multiple sclerosis. My key takeaways from this discussion are that current information is crucial for anyone navigating a diagnosis of MS or anyone supporting someone with MS.

In the last 10 years, significant progress has been made regarding diagnosis, treatment, and management of MS. Dr Levy really stressed the importance of keeping abreast of the latest data and studies, which paint a much different picture than information from 15 to 20 years ago, or even over 10 years ago of what life is like with MS.

There's hope and there are things that people living with MS can do to improve their quality of life. Lifestyle interventions like weight management and smoking cessation can reduce the risk and improve outcomes. Community support and educational resources are vital for people living with MS, their families and caregivers. To find out more information about Dr Levy's work, make sure to check out our show notes.

Thank you so much for listening. Please take a moment to follow, rate, and review this podcast on your favorite listening platform. If you'd like to send me an email about topics you're interested in or questions for future guests, please send me a note at [email protected]. This is Dr Neha Pathak for the WebMD Health Discovered podcast.