Dr. Correa:
From the American Academy of Neurology, I'm Dr. Daniel Correa.
Dr. Peters:
And I am Dr. Katy Peters, and this is the Brain Health Podcast. Welcome everyone. Everything is in the news. News, whether it's politics, this podcast, international events or inspiring stories. It's delivered us now, we're in a 24-hour news cycle. And I don't know if I can even remember-
Dr. Correa:
So many notifications.
Dr. Peters:
Yeah, so many notifications. Everything is breaking news where we're at. Breaking news. CNN was one of the first outlets to be a 24-hour news cycle. And I will say when I think of the news, the first thing I watch is the weather. I feel like the weather channel is amazing, and I want to know what's going on in our local station. Shout out to WRAL or the Weather Channel to see what's happening, if I'm going to travel. But how do you consume or engage news, Daniel?
Dr. Correa:
I mean, you're absolutely right. What's funny is I had not really even thought about the weather as when we were talking about and working on our notes and like, "Oh, what ways are you interacting with the news now?" I didn't even consider the fact. I'm checking the weather often. So without even what I was thinking about, the weather impacts how I'm thinking about my commute to work, what I'm wearing, and then when and how and what type of workout I might do and whether I'm going to go to Central Park or the gym.
Dr. Peters:
That's news to me, Daniel. That's news to me.
Dr. Correa:
You're absolutely right. That is news. But I remember, I'm thinking, I guess the news nowadays feels like so many heavy things. And I remember my relationship to news and news media changing completely, following the national and international news really after September 11th or the morning of. So back in 2001, before that I grew up in the DC area. Politics and national news along with the weather was always in the background when I was younger. But it was that morning while I was in college and then afterwards that really I started to follow and keep up to date with online and TV news, all these different sources, not just an occasional little newspaper, to understand how things around the world and our nation impacted my family, those I love, and other groups and communities around me. Now that era of just occasionally checking maybe the passing newspaper or reading an article in the news actually for high school or for college or catching news updates on the car being on the way to being dropped off for wrestling practice or just on the weekends because my family was listening to them.
I now get a morning update with summaries from two different sources on news, for neurology, for medical education, for the New York area news. And each day, maybe on my way in from work or home, I'm usually on my phone with one of the news apps, either reading a New York Times article, the New Yorker or listening to those articles or even El Nuevo DÃa from Puerto Rico. So I'm getting a variety of different perspectives. I mean, it's interesting when sometimes it does cross that barrier. Sometimes it's news and other times it's kind of more news entertainment.
Dr. Peters:
Oh, absolutely.
Dr. Correa:
And like that with podcasts, I'll catch up each week with a few news and sports podcasts to kind of summarize all the many 24-hour news I didn't get a chance to catch because I had to actually work, I'd sleep and find some time for dinner and some exercise. But I mean, this 24-hour cycle, what has it been like for you?
Dr. Peters:
I think I'm just part of it now. It's always available. You get an alert on your phone, you wake up in the middle of the night, your phone's going off, "Oh my gosh, breaking news." And it could be something as simple as something in entertainment news or maybe something that's more serious involving geopolitical changes that are happening that things can happen very dramatically. It really touches on that we are so much more connected than we realize that even though you may be in one area, the 24-hour news cycle is always going on and we are connected.
But I do remember newspapers, them being delivered to our house and it was a morning newspaper or the weekly New York Times. And I do like podcasts now that summarize the news. I've always liked summaries, like the cliff notes of the news that you can get a little bit of everything. And I do think in the 24-hour news cycle, they did have to come up with stuff that would engage us, that would make us feel active because we're constantly consuming it. So one innovation came out of CNN. It was called the Magic Wall. Do you ever see the Magic Wall?
Dr. Correa:
I've always found it so much more engaging and interesting to have a sense. It created such a visual way to understand what was going on. I'm thinking of it more recently with politics and the different elections. I remember there being walls or signage that they were interacting with to help us understand the scope of COVID impacts. I was trying to think of, do I remember that kind of technology being used before politics? Not I don't think in my interaction.
Dr. Peters:
Yeah. So the Magic Wall, it's this multi-touch collaboration wall, and it was used to highlight election results down to the details to a specific county or cities. They also called it the Magic Map. And the operator or reporter that is famous for using it is CNN's own John King. He's an award-winning chief national correspondent covering American government and politics. And he has been using this wall, innovating with it, and on air. And when covering election coverage during our really amazingly challenging time, the COVID pandemic, he revealed that he was having challenges with his own MS diagnosis, that's multiple sclerosis.
And while he was a bit worried about revealing it, he was welcomed with overwhelming support from viewers, his network family at CNN, and many, many others that were touched by his sharing of this experience. And he is with us today to share more about his journey with MS, advocacy for others with this condition, and also about his career and how he's adapted, which I think is a really hopeful message and very great to share with us about his journey. And then we'll hear from expert neurologist Bob Shin. He's a neurologist who studies MS, but particularly in regards to disparities in MS and that what is it like for populations that are not expected to see MS? And one of those includes men, which we'll talk about today.
You know his voice and his face and his reporting along with his use of the Magic Wall during election results. John King is our guest today on the podcast and he's also CNN's award-winning chief national correspondent covering American government and politics. He joined CNN in 1997 and has anchored important programming such as Inside Politics, State of the Union, and of course, John King, USA. And in 2021, he shared with his loyal audience at CNN that he also has multiple sclerosis. And since that time, he has shared his story to provide awareness of multiple sclerosis and to support others and their loved ones. Welcome to the podcast, John.
John King:
Dr. Peters, Katy, I'm grateful to be here. Thank you for having me.
Dr. Peters:
Well, you have a beautiful backdrop and thank you for being here. Tell us where you're joining us from.
John King:
I'm in Honesdale, Pennsylvania, which is a little town in Northeastern Pennsylvania. About 20 minutes north of here, you hit the Delaware River, and then you go across the Delaware River and you're in New York State. So I'm at essentially the northernmost point of Pennsylvania. This is a battleground congressional district, not what we're here to talk about today, but my job in this election year and part of my challenge is hitting the road and doing this with you have good days and bad days, good days and bad hours sometimes with MS. One of my challenges with MS is can I do my job the way I love to do my job? Everybody has a challenge and I like to turn my challenge into a motivational and a blessing, which is why I get to be out seeing all of beautiful America covering elections.
Dr. Peters:
I think that's so great that you're out there traveling and on the road. And to that point, what made you first interested in journalism and getting out there and telling stories about politics?
John King:
It was kind of an accident actually. My dad was a union guy. He was a jail guard, blue collar family. So he was a union guy. And so he was negotiating contracts sometimes with the mayor, always read the newspaper and always watched the news. I was 10 years old, I guess, during Watergate. So through my dad, through both his life and what he did when he was home with us, it was important for me to read the paper and watch the news and to be involved. And I heard him involved in politics because of his union job.
When I went to college, I was majoring in English and history and I had no idea I was a typical 17, 18-year-old kid. I had no idea what I was going to do if I grew up. And I had a Shakespeare professor who said, "You like to write, why don't you try a journalism class?" And I took a class and then I got an internship and I said, "Wow, they pay people to do this?" And off we went, and that was 40 years ago, and it's been a blessing. I had to borrow every dime to pay my way through college. And now I like to say they pay me to learn. It's the greatest job you could ever have.
Dr. Peters:
Well, it sounds like your dad really contributed to that. And we just want to say Father's Day is around the corner, so shout out to all those dads. And of course, if you're a dad.
John King:
Amen.
Dr. Peters:
Absolutely. Now you're known for the Magic Wall. So do you remember the first time you had to use it on the air? And did you think, actually, was this going to work?
John King:
I was petrified, horrified. Anytime I think about it now, that was 2008. The first night I used it on television was the New Hampshire primary, so early 2008. And if you think about then and now in terms of the changes in technology, our phones weren't smart then or they were just becoming smart. A lot of us still had BlackBerrys. Some people still had pagers. And now we're in the AI era where we're worried about deep fakes and how do we use AI in a good way and how do we block AI from doing horrible things in our lives? And what is AI's impact on the employment community and everything? What do we tell our kids to learn in school?
But the Magic Wall was a revolutionary technology at that time, a touchpoint screen. My boss at the time saw it at a military hardware show. They were trying to sell it to the Pentagon for special operations so the generals and the president could, they're doing the Bin Laden raid and we have these ships at sea and here's the map. And so you could game it all out on the screen. And my boss saw it and we were heading into the election cycle and he was like, "Wow, wait a minute. I could do amazing things with that." And he was right. He was brilliant. David Bohrman was his name. And so we brought it into television and I was worried.
I'm an old print guy who switched to television. I was initially worried it was going to be a toy. There were some gizmos in television, people just used to have bright flashing lights and all that. It is the most fascinating information tool I have ever had to work with. And we constantly update it because the technology is better and the data is better and we learn lessons of how to use it and how not to use it. But you're using your hand essentially as a mouse and I can go anywhere in the country and I can also access any database of information and then bring them all together in one place. So it's been fascinating. I would say it's proof that you can teach an old dog new tricks.
Dr. Peters:
Well, that's a far cry from where the newspapers of your dad to use the Magic Wall. So I think that's a great use of technology. Now you're close to Delaware right now, physically. Delaware's getting their first medical school, if you can believe it, their first medical school and you're in politics. And I was wondering, could you give us sort of your bird's eye view of where medicine and politics come together?
John King:
Well, I mean, I have to be careful not to take sides, but I do think one of the big debates in our country right now, and this is something I tell when I speak to any MS organization or MS community or people who bring me in to share my experience is that I can't take sides because I have to cover politics. But obviously federal funding for research is a big issue. It's a bigger issue now than it was five or 10 years ago under maybe different presidents or different Congress. So I can't get involved in the different presidents in different Congress, but I can get involved in this is an issue that is absolutely critical. For MS and for other diseases in which even an expert like yourself has to tell a patient sometimes we don't know because it's such a mystery still in so many ways.
And so for any disease where the experts that we love and cherish and rely on like yourself have to say, I don't know, we should of course be trying to direct resources to help them answer those questions, to help them a year from now or two years from now be able to answer some of the questions you can't answer today. So I think that, again, without getting involved in any specific politics of it, people should be motivated to make sure that our tax dollars are being well spent and our priorities include medical research, not just for MS, but for anything for which the community needs help finding answers. That would be the main thing there. In terms of my personal journey with MS, I am blessed. And one of the reasons I was reluctant to talk about MS early on and kept it a secret is I work for a great company.
We have a good healthcare plan. Like any company, things have changed in the last 20 years and we've had different corporate owners over 20 years. Is it as generous now as it was 15 years ago? Probably not, but I'm lucky in that I've always had a pretty good healthcare plan, including a pretty good prescription drug benefit. And so part of my thing is who is John King who has relapsing, remitting MS. I have horrible days sometimes. I have frustrating days almost every day, but on the spectrum of MS, I'm pretty lucky and I know that. I know what this cruel disease does to people. So sometimes I've been reluctant to speak out about it, but in the context of your question, I'm blessed that I have had from day one amazing doctors who help me and guide me and who are honest enough sometimes to say, "We don't know." And to say, "It took me three different medications to find one that seemed to slow the growth of my lesions. And that was 18 years ago. I've only had modest progression since, and I'm grateful for that and I'm lucky for that.
And I certainly hope that stays the case. But I have doctors and about just three years ago now we added dalfampridine to my mix and it was a game changer. And it was a young resident meeting with my neurologist who talked to him and said, "We're seeing some evidence that this might help people." And total game changer for me in terms of being able to function because of the fatigue I was getting in my legs and how hard it was to stay on my feet and to walk. And so I'm here today. I'm traveling. I'm on the road today. I'm speaking to you from where I am. I can stand up for 15 or 16 hours on election night. That takes a toll on me. I'm able to hide it from you while I'm on live television. It takes a toll on me, but I can do it thanks to amazing doctors and their teams, not just the doctors. I always say on television, you see my face. There are people on the cameras, there are producers, there are writers, there are so many other people, and I'm sure you feel the same way.
Dr. Peters:
Absolutely.
John King:
The, quote, unquote, "faces" get credit and for anybody out there who trusts me to give election information, great. I'm grateful for that and I value your trust, but I couldn't do it without a whole lot of people. And the same for my medical treatment and I cannot find the words to express my gratitude for the teams I've worked with over these last 18 years.
Dr. Peters:
Well, thank you so much for sharing all that and for thanking the myriad of team members. It does take a team. And I will say the treatments for multiple sclerosis have really changed really since I was started as a resident to now. So there is so much more opportunity for patients to have a good quality of life. And I think when you revealed to your audience and the people that watch you, to your viewers, did you learn something back from them when you revealed that you did have multiple sclerosis?
John King:
Yeah. I learned first and foremost, Dr. Peters, that I had been an idiot to keep it in the sense that I was initially worried. First I was frightened. I did the mistake everybody does. I went on the internet and Googled multiple sclerosis. I didn't know in those days what relapsing would mean. I wasn't even sure I had relapsing remitting at that point when I was first diagnosed. And I had young children and I though, "Oh my God, am I going to be able to walk? Am I going to be able to do things with my children? Am I going to be able to do my job? How is my life going to change?" So the initial secrecy was fear. And then I had this view that my bosses were going to discriminate against me for the best reason, not for bad reasons, but to protect me. You can't go out on the road.
We're afraid to send you to Iraq. That was back in the days the Iraq War and the Bush administration, can't let you do those kind of things because we just have to keep you close to medical care. And then you're a year into it, two years into it, three years into it, and you've been keeping a secret and you can't figure out how to get out of it then. It becomes a snowball going down a hill. And so that's why I kept it. When I came out, I realized, number one, there is a breathtakingly compassionate MS community all around America. And I had a woman from one of the poorest counties in West Virginia send me a walker. I don't need a walker, but those things cost money. I mean, that's a several hundred dollar thing. And just with a note saying, "I love your work and I value your work. In case you ever need this, I wanted you to have it."
And so there are just amazing human beings out there in every state of every income group. And so what I learned was by keeping my secret, I was denying myself advice and help and support from people. I'm not trying to name-drop, but I text now sometimes with Christina Applegate. She reached out to me, she wanted to share stories with me. And I text with people whose names you will never know. And I go home to Dorchester, Massachusetts, where there is a breathtaking facility called the Boston Home where they help people who have progressive MS, some of whom were a dancer a year ago and are in a wheelchair now. That's what I mean about the cruel part of this disease. It takes from too many people things that define them, things that are the joy in their life, things that are the organizing principle in their life, oftentimes things that are the source of income and resources in their life.
I have been blessed that that hasn't happened to me, which was one of the reasons I was reluctant to talk. I didn't want people to see John King on television and say, "Well, MS must not be that bad. He looks fine. He's functioning. It must not be that bad." When we all know how cruel it is to some people and how much of a struggle it can be for the people who are able to hide most of it like me. I don't want pity for that. I did realize there's a whole lot of empathy and support out there in the MS community, and that has made me stronger. And it was mind-blowingly heartwarming to feel that.
Dr. Peters:
Well, thank you so much for doing that and you became part of a community in addition to the community that you're on TV and you can be an advocate for those. Now, what are your hopes and aspirations for others living with MS?
John King:
Number one, that they realize like I did, that there are a whole lot of people out there. The thing I've learned about MS is it's different for everybody. I explained to my team, sometimes my Monday can be so much different from my Tuesday. Sometimes my afternoon can be so much different from my morning. We're into summertime now. Heat and stress are the two things that trigger me the most. And so when I see the temperature hit 70, I go, "Uh-oh." And then when I see the temperature at 80, I go, "Whoa-oh, whoa-oh." And then if the temperature's moving up toward 90, I know I'm going to have a lot of dysfunction and a lot of struggle in my day. If it gets above 80, I'm going to struggle to move, to function, to hold things, to keep my balance, to not get enormous fatigue and headaches.
So what I would tell people is there are people like me and including me who can give you a pep talk, give you some advice, share what works for us. It might not work for you, but let's have a conversation. There are places online, there are places like this. I'm grateful for what you do, where people can just see somebody who, my MS will be a piece of somebody else's MS. Their MS will be a piece of my MS. As we pull all these things together, every little bit of the data, for some people it's diet. For me, exercise is critically important to me. Understanding, remembering, do you have to keep a journal to do that? Can you keep it in your head of what are the things that trigger you? What are the surprises out there? When did you last have maybe two or three days that were, "Wow, that was pretty good. All things considered, that was pretty good." And were you doing anything different? Let's learn from each other. Let's take notes and let's work it out.
Dr. Peters:
I completely agree. And I think that it's really important for a lot of people with different neurologic conditions to have a community. So, John, how can we be better allies and advocates for everybody that has multiple sclerosis? How can we be better allies and advocates for them?
John King:
I think it's a fantastic question because it's both a simple and a complicated question. Number one, I think just being available. You have a scientific expertise. I have an experience, maybe expertise, or at least I have an experience that I can help share with people. And I think we both know one of the frustrating things, one of the most challenging things about MS is it's different for every person. Sometimes every hour of a day can be different for a person. It's getting very hot. That's my biggest trigger, heat and stress. So I think being available, number one, and then two, being cognizant of how different it is for other people. And then the third layer of that is that everybody wants to handle it differently. Some people do want to keep it quiet. Some people do want to keep it secret. Some people are reluctant to seek help.
Some of that's general stubbornness. Some of that's fear, especially if you're newly diagnosed and you don't know what's going to happen. So I think we need to be flexible and I think we need to be available and I think we need to be patient. One of the things I'm not. If you went back 20, 25 years in my history, you would not find many people who said John King is a patient person. I think I'm a lot more patient now because MS has taught me. MS has made me a better, stronger person. MS frustrates me. MS challenges me. MS sometimes denies me the ability to do things that I love, but it's also made me stronger. I hope it's made me a better person of character, and I know it's made me more empathetic and a better listener. And I think that's the biggest thing we can do. Listen to what the person seeking your help needs and sort of adapt your approach to them. Don't think you know best because it's different for everybody.
Dr. Peters:
And you heard it here on this podcast. You got to listen and be flexible. I think those are two very important things. And the other thing you weaved in there that I think is really important is for all the individuals with MS, heat is a really big trigger and a big problem, and there's a heat wave going across the US right now. So I just say everybody keep cool. I think it's really important.
John King:
Amen to that. And just be aware of it. I mean, I leave my house and I feel great sometimes. By the time I get to the car in the driveway, it's literally 20 yards, my legs are jello and my brain is clouded. Sometimes it's that fast. And so I think you just have to be self-aware and understand that, again, tomorrow I might have a better day. I don't know, but just be aware.
Dr. Peters:
Yeah. I'm a big fan of the neck fans. I often tell my own patients because the heat isn't good for them either. And we're all about promoting brain health and brain awareness. What is the most important thing that you do on a daily basis for your own brain health?
John King:
My exercise helps me. I know that's probably not brain health, it's more of a metabolism and a physical health, but it gets me energized to get into the game. And then I obviously have to do a lot of reading in my work, especially because it's an election year now, so I'm doing a lot of data. Some of that can be really eye-glazing and heavy. It's just tough stuff to do, like reading a science journal. It's important stuff, but sometimes it's hard and sometimes it tires the brain. So when you get tired, that might be normal tired. It might be normal tired plus MS fatigue. So take a break when you need a break, come back at it, make sure you're hydrated. That's not a brain thing. And then when you do have spare time, I'm big on Wordle and Sudoku and I think we're supposed to do that as we get older anyway to try to just stay nimble, but I enjoy the challenge of word games. My son is away at camp right now. I'm actually enjoying writing him letters-
Dr. Peters:
That's so great.
John King:
... which is a lost art. We don't do that. We just quickly text or we do this or we do that. So I think again, find things that work for you, but even if you feel like you're in a comfortable place, I think that's even the time to maybe raise the bar and challenge yourself a little bit more. If you think you're doing okay, just remember what MS can do to you. I hope it doesn't do it to you, but understand what it can do to you. And that's sort of my thing. It's like preventative medicine, right?
It's just if you might have a cognitive decline and you will anyway as you get older, but if MS may complicate that in some way, what can you do? Talk to your healthcare provider, talk to your friends. What works for you? What doesn't work for you? And then just get involved and find things that are fun. Wordle and word games like that because I like to write, so I think that's what gets me. Maybe for other people it's math or maybe it's crossword puzzles or something. But again, find something that works for you because you need to do the work, so you might as well be happy and enjoy us doing it.
Dr. Peters:
Yeah, I love all those word games. I'm a huge fan. And one of our guests we had on the podcast previously was Will Schwartz, and he's the puzzle master for the New York Times. So it was a lot of fun talking to him.
John King:
Yeah, that's a great job. That's a great job.
Dr. Peters:
Yeah, he studied enigmatology of all things in college, which is the study of puzzles I learned. So pretty interesting. Now that we're sort of at the tail end of this podcast today, what would be the one piece of advice that you'd share with others about MS?
John King:
Beyond that it sucks, give yourself a break. Give yourself credit. Even on your worst days, you're fighting back and you're beating even just for a few minutes or for an hour or maybe for the entire day, a disease that has frustrated the doctors and stymied the doctors for years and decades. And so you're part of a movement, but you're also an individual who's just getting up and doing the work every day and doing what you can. I'm a stubborn person. It's hard to realize sometimes I can't do something I wanted to do, or at least I can't do it in the way I wanted to do it. So find a workaround, stay at it, be stubborn, give yourself a break when you need it. But I think one of the things we do sometimes is we focus, it's human nature, but it's going to be especially when you have something like MS and you focus on the negative.
It's hot today. I can't walk right. It's hot today. My brain is foggy. It's hot today. I can't hold things as well as I could yesterday when it was cool. There are a lot of negatives. Just don't get caught in that spiral. Doesn't mean you don't have to deal with them, but focus on the positive. What did you do? Maybe it was hard, but you did it and you got to the finish line and use that as a building block. I've become a huge believer in positive psychology, in positive thinking. And if you don't celebrate your successes, if you only dwell in the frustrations and the sometimes failures, you'll take yourself down. When to get through this, you need to lift yourself up. So celebrate your successes no matter how small they are because they're building blocks.
Dr. Peters:
I couldn't agree more. I'm a big celebrator, and thank you so much, John, for sharing your story, for your passion, for your advocacy, for others with MS, and really sharing your own personal journey. It means so much.
John King:
I appreciate that very much. And again, I appreciate your help too. We're all part of this journey together, so anything we can add that helps ourselves and then helps somebody else, that's what we call community, right?
Dr. Peters:
Absolutely. If you're enjoying the Brain Health Podcast, we love your support. Take a moment to rate and review us on Apple Podcast, Spotify, or wherever you get your podcasts.
Dr. Correa:
And your feedback helps more people find us. So if you leave a review, you might be the reason someone else starts their Brain Health journey.
Dr. Peters:
It's also a huge help if you subscribe. Thanks for listening and for helping us grow. Hello, podcast audience. It's so great to be here with you again today. And we also have one of our medical experts. It's Dr. Bob Shin. And Dr. Shin is a professor of neurology and director of the Multiple Sclerosis Center at the University of Virginia School of Medicine. He has a special interest in health disparities in multiple sclerosis and visual problems associated with patients that have MS or other demyelinating disorders. Dr. Shin, welcome to the Brain & Life Podcast.
Dr. Shin:
Thank you so much for having me on.
Dr. Peters:
Great. Now, are you in Charlottesville today? It's such a beautiful place.
Dr. Shin:
I'm in Central Virginia. I'm a little bit outside of Charlottesville right now, but definitely based in sort of the central and southwest part of the state.
Dr. Peters:
Such a nice part of the world. It's just such a beautiful area. And can you tell us a little bit more about yourself?
Dr. Shin:
Well, I did my medical training at the University of Pennsylvania in Philadelphia, and I had faculty appointments in Baltimore at the University of Maryland and in DC at Georgetown before I took a position at the University of Virginia, as you said, as chief of MS and neuroimmunology. I joined the departments of neurology and ophthalmology here. So I've been gradually working my way south, I guess, over the course of my career.
Dr. Peters:
You got one more state. I'm in North Carolina.
Dr. Shin:
Yeah. Yeah. Who knows? Maybe there'll be another chapter in my future.
Dr. Peters:
Well, I know you're really busy at UVA and it's a great institution. We're here to talk about multiple sclerosis and also other demyelinating disorders too, since you're an expert. And we got to talk to John King, who's an amazing reporter on CNN, who has been dealing with his own diagnosis of multiple sclerosis. For our listeners, can you just give us the basics of what is MS?
Dr. Shin:
Well, if you think about the immune system as cells in your body that protect you from infection, I think your listeners would be aware that every once in a while the immune system gets mixed up. So for example, if people have heard of things like rheumatoid arthritis, the immune system starts to attack the joints and causes pain in your fingers or other joints. Maybe they've heard of lupus where the immune system gets mixed up and attacks maybe the skin or your kidneys or other organs. Maybe Crohn's disease, the immune system is mixed up and it attacks the gut causing stomach pain, cramping, diarrhea, things like that.
While sometimes the immune system gets mixed up and it starts to attack the brain and spinal cord, that's multiple sclerosis. So it's an immune system condition that affects. Usually most people develop symptoms in young adulthood, and it can really cause a variety of symptoms because if you think about it, the brain and spinal cord control so much. That could be vision, which is one area of interest for me, but can be weakness, numbness, cognitive issues, fatigue issues, bladder symptoms. All kinds of different issues can happen with multiple sclerosis.
Dr. Peters:
It really is such a fascinating illness because we think of our immune system as protecting us. And so when it goes haywire like this, it has to cause a myriad of symptoms. If you had to choose what were the top three symptoms you'd see in a typical MS patient, what would they be?
Dr. Shin:
Yeah, that's a great question. Some of the most common presenting symptoms of MS do include vision, and that could be blurred vision or vision loss in one eye or double vision, for example. Another common symptom is dizziness or imbalance or sort of a disequilibrium feeling. Also, we have to watch out for things like weakness and numbness, for instance, in the arms and legs or affecting the face. These are just some of the symptoms, but maybe some of the more common symptoms people might start out with MS.
Dr. Peters:
And what are some risk factors? If you're concerned you're having a symptom such as this, what are some of the risk factors for developing MS?
Dr. Shin:
Well, it's something that we've been learning more about over time. There was a stereotype maybe for a long time that multiple sclerosis primarily affected young women of Northern European ancestry. So young white women, that was sort of a common demographic we would pay attention to. However, we now understand that MS affects men as well as women. It affects people of all races. It doesn't matter if you're Black or you're white, and actually it can affect people in all different age groups. So sometimes even children can be diagnosed with MS, young adults as I mentioned, but we've diagnosed people with MS in their 60s, 70s, 80s, so you're never too old or too young. Now, in terms of other risk factors that we've learned about, one observation which is a little bit interesting is that very low levels of vitamin D seem to be associated with an increased risk of being diagnosed with multiple sclerosis.
Another thing that we relatively recently are learning is that it does appear that MS has a viral trigger, meaning a viral infection that we all might bump into every once in a while for unknown reasons might trigger this confusion of the immune system, if you will, called MS. And one of the leading suspects in this case is Epstein-Barr virus, which I do want to caution, pretty much all of us have bumped into Epstein-Barr virus. Some of us that have things like mono. So I don't want people to be alarmed, "Oh my gosh, I had mono, maybe I have MS." But just to be clear, for a small number of individuals, it looks like Epstein-Barr virus is the trigger that could lead to a diagnosis of MS.
Dr. Peters:
It's amazing that you sort of pulled out that one characteristic about vitamin D. Can you give us a little bit more information about that and pause it why low vitamin D could be associated with being a risk factor for MS?
Dr. Shin:
Well, it's not completely understood, and I guess I should also disclose that there are other patterns of MS that maybe I didn't mention yet. For example, it appears historically that MS did develop first in Northern Europe, or at least the first cases we ever heard of in history, which just goes back, if you will, just goes back a few centuries, seems like cases began to emerge in Northern Europe. Now, MS is very common in the United States. It's very common in Canada, for example. We see a lot of cases in Australia, and that's interesting because all of those areas on our planet are kind of far from the equator. So there's kind of a funny way you could link EB, "Oh, that's interesting."
We see a lot of MS in Northern Europe, US, Canada, Australia, all areas farther away from the equator. We don't see it as much in Sub-Saharan Africa, Southeast Asia, maybe Central or South America, not as much. And what do we know about vitamin D? Well, vitamin D, our bodies create that from sunlight exposure. So the more sunlight exposure you have, the higher your vitamin D levels. So one theory was like, "Oh, maybe we see a lot of MS in those areas because there's not as much sunlight if you're in the northern or far southern latitudes, you don't get much sunlight, maybe not as much vitamin D."
But it's kind of confounded by the fact, if we're really honest about it, is who lives in the United States and Canada and Australia? These are descendants of Northern Europeans. There were sort of colonization from Europe a few centuries ago that led to that. So all of these things kind of cloud the issue. Is it related to your ethnic background? Is it related to how much sunlight exposure you have? Is it some sort of combination? All I can say is that we've observed that very low vitamin D levels are associated with risk of MS, but I would also comment that very low vitamin D levels are more common the farther you are away from the equator. It's so confusing in some way, so we can make the observation, but to your question, but what does that mean is still being worked out?
Dr. Peters:
I think it's just very interesting and this is where. I remember when that was presented at the AEN and they showed that data, how this is going to evolve. It's going to be an evolving story. I'm going to ask you another question, and I hope I'm not putting you on the spot, but would you then predict that if climate change is happening, that changes in MS and the way it presents potentially or who gets it could also occur?
Dr. Shin:
Well, that's a super insightful question because we have observed that there are more cases of MS being diagnosed now than in the past. We think actually almost a million Americans have MS, so it's actually much more than we used to estimate. We used to think it was maybe a few hundred thousand, and so we've been under counting it. Now, another question then comes up, well, are there actually more cases of MS or are we just getting better and better at diagnosing MS? I also kind of comment if you go around the planet, I'm just going to pick an area, but for instance, in the Middle East, there's been an observation that cases of MS seem to be increasing in that area. To your point, is this related to something that's changing on our planet? Is it just technology? Do we diagnose it better? Is something else going on? So definitely, there are a lot of questions, maybe more questions than answers in this regard.
Dr. Peters:
Well, I think one of the things that we don't have a question about is how we detect it. We now have really good tools. Can you tell us more about how you would detect MS in a patient?
Dr. Shin:
Well, for a long time, we had a foundational principle of looking for what we would call dissemination in space and time, which sounds sort of weird, but what we're just trying to say is that people with multiple sclerosis typically have multiple episodes that affect multiple different parts of your central nervous system, meaning brain, spinal cord, optic nerves, for example. So when we say dissemination space and time, we would say, "Oh, well, disseminated space means when you go to see your neurologist." And the neurologist is doing an examination, we might find maybe multiple abnormal findings on the examination that would tell us, "Oh, there must be some sort of injury in different parts of the central nervous system, so distributed, if you will, in space."
However, we would also require that you have had multiple episodes of neurological issues, and this is really more of a historical thing, meaning let's say somebody, "I was in college, I lost vision in one eye, I thought I was just studying too hard, vision got better, but then a few years later I got some tingling and numbness in my leg and that led me to this diagnosis of MS." And so there you go, there's someone who's had two different episodes, dissemination in time, and it's affected two different parts of the central nervous system dissemination in space. Now, over the past, well now over 25 years, we've incorporated MRI, so magnetic resonance imaging. It's a non-invasive scan, kind of like a CAT scan, but doesn't involve any radiation. The MRI scans have allowed us to make the diagnosis earlier because we don't have to wait for an individual to have multiple episodes if I can see changes on the MRI scan.
Maybe I don't have to wait for there to be lots of abnormalities on the examination if I can see that there are little small spots on the MRI in multiple different areas, and that's really helped us to make the diagnosis more accurately and more rapidly. Then the last point I would want to add is that just recently, within the past year, there have been new or modifications to these diagnostic criteria, which now include additional kinds of markers, including special imaging techniques and an interest in special kind of laboratory testing to, again, help us to make that diagnosis even more easily. But the principle is still the same, whether we're using lab tests or spinal taps, which is getting cerebral spinal fluid, or just looking at the history and exam, we're really looking for dissemination in time and dissemination space to make this diagnosis.
Dr. Peters:
And you also have a special interest in the eye disorders associated with MS. Can you describe how you monitor those and do you use any special imaging or techniques to detect those?
Dr. Shin:
Well, my original training actually is in something we call neuro-ophthalmology, which is really the neurology of vision. However, this was in the 1990s, early 2000s when we were just learning about how in early MS there are often visual symptoms. Some studies would say that almost half of individuals can present with a visual symptom of some type, as I said, vision loss or maybe double vision. So it's an area of interest because in studying vision, that naturally led to an interest in multiple sclerosis. Now, you asked about how we monitor individuals, of course, the examination. If you've ever been to the eye doctor and looked at the eye chart, maybe you see that on TV, the doctors have a flashlight and they're shining it in the eyes looking at the pupillary response.
Over the past few decades, actually, another tool has come up that's been very useful, something we call optical coherence tomography or OCT. And this is a non-invasive study. It just kind of looks at the back of the eye and can tell us about the health of the optic nerve and the nerve fiber layer in the back of the eye. It takes about 30 seconds per eye. It's a very rapid, painless, non-invasive test. And that's really helped provide a lot of insight into vision and MS. For instance, the eye, the back of that, is really part of the central nervous system. So it's the one part of the central nervous system that I can literally look at. So there's been a lot of interest in vision and its relationship to MS.
Dr. Peters:
Yeah. I actually was trained in how to do OCT when I was in my first fellowship and got to work with some of the MS group at my institution, which is Johns Hopkins.
Dr. Shin:
Awesome.
Dr. Peters:
Now you have a special interest in health disparities and also in how men also have MS. Can you sort of just elaborate a little bit more in your special interest about health disparities and how it pertains to multiple sclerosis?
Dr. Shin:
Well, as we mentioned a little bit earlier, there had always been this kind of stereotype that MS primarily affects young women of Northern European ancestry. Now, what was observed was that if you're, let's say a man, not a woman, and you get diagnosed with MS, that your prognosis, your outcome seems to be worse. It's as if you have worse MS. For that matter, if you are non-white, let's say you're a Black individual or a Hispanic individual who gets diagnosed with MS, you don't seem to do as well as people living with MS who are white. The group that seems to have actually the worst prognosis in many studies is actually Black men because they're neither women nor white. But another disparity we've also observed, and so you trained in Baltimore at a leading institution, a very urban environment.
What we've observed is that if you live in maybe a more rural area or maybe we might call it a healthcare desert where maybe you don't have easy access to a neurologist, for that matter, you may not have access to an MS specialist, maybe there's not a single MS specialist for many hours from you. Again, your outcomes might be worse. So even though we've learned a lot about multiple sclerosis, and we'll probably talk about how we might treat multiple sclerosis, what we've realized is, you know what? MS doesn't affect everyone equally. And if you're not that stereotype, if you're not a young white woman, sometimes outcomes can be worse. And that leads to then the question of, well, why is that? And one possibility could be that, well, maybe we're not primed to recognize MS as early if you don't fit our stereotype.
There are many studies and many observations that if you don't fit the stereotype, it takes you much longer to get MS. You might hear a story, and today, you might hear a story of someone who maybe in retrospect had symptoms a long time ago, but it took many years before anyone even thought that it might be MS, and that is such an unfortunately common story. And one thing we know about MS in the era of treatment is that the longer it takes before you get on an effective treatment, the worse you're going to do. So the key to a good outcome is early accurate diagnosis and early access to highly effective therapies. Again, that's why these disparities to me are of such interest because at least my thought is that, well, wait a minute, if this is due to our own, let's say, bias or lack of access to specialized healthcare, maybe we could do something about that and really move the needle.
Dr. Peters:
Thank you so much for definitely your advocacy in this space, because I do think the earlier diagnosis is so key. We've been telling that for years in the stroke world, right? Time is brain.
Dr. Shin:
Time is brain. Exactly. It's true in MS as well. The time scale's different. Maybe it's not minutes to hours, but absolutely time is brain. The longer we delay, the greater the chance of accumulating some disability.
Dr. Peters:
Since I was a resident and trained, when I was doing that fellowship where I got to do some OCT, what had just come to the forefront was TYSABRI, which was sort of a first big shift. But I remember taking care of these patients with multiple sclerosis, really with a lot of times with steroids. We were doing maybe some high dose chemotherapy regimens for patients that had really bad demyelinating disorders. But in my opinion, the world of treatment of MS has just radically changed. So can you share with us and our audience how we treat MS in modern today?
Dr. Shin:
Sure. And you're talking about really just the early 2000s, which really in a way seems like yesterday, and not the name-drop too much, but the leader of the MS center at Hopkins at that time, of course, is Peter Calabresi. We had worked together when he was at the University of Maryland before he went to Hopkins and created that center. But you and I, and maybe I, I think I'm a little older than you, can remember a time when multiple sclerosis was not treatable.
Dr. Peters:
Oh, yeah.
Dr. Shin:
Even into the early 1990s, MS was one of these neurological diseases that had no treatment. And so often young individuals would come to the office, they'd have their symptoms, we'd do an MRI scan, we would make the diagnosis of MS, and we would try to gently break the news to that individual that they had a disease called multiple sclerosis. And we would actually say things like, "The odds are that you're going to be disabled, you're going to need a walker, maybe a wheelchair within five to 10 years." And that's really what we saw in the era of untreated MS. Disability was relatively rapid and essentially was the norm. Now, in the early 1990s, we had our first treatments for MS, and we had a handful, not even a handful, a small number of treatments. They were all self-injected. They are, I would say, modestly effective, but they were something, they were better than nothing, and we definitely were using them in the first, let's say, decade of MS treatment.
Then you're talking about the advent of monoclonal antibodies, biologics like natalizumab, which offered a completely new level of effectiveness, high efficacy treatment options. In 2010, which again, frighteningly is a long time ago now, but it just seems like it just happened, but in 2010, we had our first pill for MS. And now we have so many options, additional biologics, high efficacy options come on to the point that from a time when I remember there being zero treatment options for MS, we're now talking about more than two dozen options that have been FDA approved for the treatment of MS, and the effectiveness of these drugs is through the roof. We went from being unable to help individuals and really just counseling them to be prepared for disability to the point that with our highly effective therapies, I'm not saying that we've cured MS, but if we apply highly effective therapies early, we make the diagnosis in a timely manner, get them on a highly effective therapy, some studies suggest that we may see no evidence of disease activity in nine out of 10 individuals. That's 90% of individuals-
Dr. Peters:
That's amazing.
Dr. Shin:
... who may have no MS attacks, no change on their MRI, and no increase in disability over time as long as they're on these highly effective therapies. So it's almost hard to convey how different the landscape is in such a short period of time. I don't know, I appreciate this podcast because I'm not sure we've gotten the word out to everyone. I still encounter even providers, even physicians who still assume that it's the way it was when they trained when MS was a difficult to treat condition without a lot of options. And so trying to get the word out that this is a condition that is very treatable, very manageable if we can make the diagnosis correctly, early, and get them on a highly effective therapy.
Dr. Peters:
I couldn't agree more. We have amazing listeners, so they will spread the word and put it out there. So I have one last question. What are you excited that's going to be sort of new and in the research area for MS?
Dr. Shin:
Oh, there is so much research that's evolving in MS. For example, and this question comes up a lot when people come to visit me, they ask about things like stem cell treatments. The reason that's important is because as we discussed at the very beginning, MS is an immune system disorder. We don't appear to be born with MS. The immune system is normal at first and then gets mixed up, as we said, maybe in teenage years, young adulthood. So one approach would be, "Wait a minute, what if we could reset the immune system? What if we could in some sense start over?" And that's when you hear about things like stem cell transplants and things, often using your own stem cells. We all have stem cells in our bone marrow. Maybe we could use those cells to reset the immune system. So there are active clinical trials going on right now at multiple centers, UVA is participating as well, looking at stem cell treatments for controlling MS.
Maybe we could just start over with a new immune system that doesn't have MS. When we look at pharmaceutical, when we look at therapeutics, there is another category of medicines on the horizon. So for example, I mentioned there are literally more than two dozen FDA approved treatments, really too many for us to go through medicine by medicine, but they kind of cluster into different families. We'll have multiple medicines in a given class, for instance, anti-CD20 agent, B-cell therapies are a widely used class of medicines today. You talked about other biologics. There are many oral therapies as well. But there's a new mechanism of action, a new class of medicines, which we refer to as BTK inhibitors.
That stands for Bruton's tyrosine kinase inhibition. It's kind of a technical thing, but these medications, these are actually pills for MS, seem to target certain cells within the central nervous system called microglia. So again, we didn't get into a lot of the nitty-gritty, but a lot of focus in MS treatment over the years has been other immune cells, specifically T cells, and then within the past decade or so, B cells, which has been very effective at controlling MS. However, the immune system is quite complex, and now we're aware of yet a third population of cells that may be responsible for that very gradual insidious worsening. So some MS patients obviously have episodes, relapses, attacks, exacerbations, whatever term you use for them, and those are very obvious, and obviously we want to try to control those.
Now, the existing MS therapies are actually, as I sort of hinted, quite good at suppressing those MS attacks, but there is a little bit of a challenge, which is that even when we shut down the MS attacks, even when your MRI is stable, some MS patients do gradually worsen over time, and we refer to this as progression. Sometimes we use this other term, PIRA, progression independent of relapse activity, and so that remains a challenge for us. This new class of medicines, BTK inhibitors offer promise at slowing down the progression of MS in a way that we haven't been able to before. We don't yet have a BTK inhibitor approved in the US. Recently, one was approved in Europe actually and in other countries, but there are a couple of BTK inhibitors on the horizon that we're hoping, we're going to keep our fingers crossed, may offer that effectiveness for that progressive form of MS that is so challenging.
Dr. Peters:
Well, that is so interesting. In my world, we give BTK inhibitors for primary CNS lymphoma.
Dr. Shin:
That's right. Yeah. It's a cancer drug, really, and we're trying to apply it in multiple sclerosis and there is a lot of promise there.
Dr. Peters:
Well, I really appreciate all of your time and for educating us. If you are concerned, if you have symptoms, be aware because early treatment is so important for patients that are ultimately diagnosed with MS. Dr. Shin, thank you so much for being our expert today.
Dr. Shin:
Oh, it was such a pleasure. Thank you.
Dr. Peters:
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