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RealTalk MS
Episode 412: Understanding Late-Onset MS with Dr. Jacqueline Nicholas
00:30:58
More people over the age of 50 are being diagnosed with MS than ever before. When you consider the other health conditions that often develop as we age, and you add the fact that our immune system changes with age, there's a lot to think about when it...
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- [00:01]
A
I'm john strum, and this is real talk, mississippi.
- [00:18]
It's July 22, and we have a lot to talk about. As we've discussed before on this podcast today, more kids are being diagnosed with pediatric Ms. Than ever before. And that could simply be the result of greater awareness about Ms. And better methods of detecting and diagnosing Ms. Well, applying that heightened awareness and those better diagnostic methods isn't limited to kids and teens. Add in the fact that people are simply living longer and we see that more people over the age of 50 than ever before are being diagnosed with late onset Ms. But where pediatric Ms. Almost always seems to be of the relapsing, remitting variety, late onset Ms. Is often characterized by a more progressive disease course along with greater motor disability. Joining me today to help us better understand late onset Ms. Is Dr. Jacqueline Nicholas, the system Chief of Neuroimmunology and Multiple Sclerosis at the Ohio Health Multiple Sclerosis Center. But before we get to my conversation with Dr. Nicholas, there are a few other things that you should know about.
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It's been well established that early intervention leads to better outcomes, a better quality of life for people living with Ms. Well, what if that early intervention could start a few years before someone developed ms? Any Ms. Symptoms? Would treatment with a high efficacy, disease modifying therapy keep that person from even developing Ms. Symptoms? Now, technically, that may not be a cure, but here in the real world, it would certainly feel like one. And here in the real world, we may be a step closer to being able to do just that. A few years ago, research results conclusively proved that the Epstein Barr Virus, or ebv, is a trigger for Ms. By itself, it's not considered a cause, but it is a necessary condition. And if you think about a gun for a moment, it's easy to see that without a trigger, that gun never goes off. But here's the other thing that scientists understand. About 95% of the population carries the Epstein Barr virus, and clearly 95% of the population does not have Ms. So is there something about the Epstein Barr virus that doctors can use to predict who will get Ms. And who won't? The answer to that question may rest within research results just published by a team in Vienna, Austria. But first, a little background. Past research has shown that we develop antibodies against a specific part of an EBV protein called EBNA1. Now, getting back to this latest study, the researchers wanted to determine whether the levels of the antibodies that are produced against that part of an EBV protein that EBNA1 could be used as a biomarker to predict a person's risk of developing Ms. So they measured the EBNA1 antibodies in blood samples from 700 people with relapsing remitting MS, as well as 5,000 people who didn't have Ms. To serve as a control group. The Researchers found that 98% of the people with Ms. And 78% of the people without Ms. Had detectable antibodies against a specific region of the Ebna1 protein, and among the people with MS, the levels of this antibody were significantly higher at the time they were diagnosed with Ms. The research team drilled down further and found that among a subgroup of individuals now, these were people for whom the time of their EBV infection could be determined and traced well. Among Those people, the EBNO1 antibodies became detectable within three years of their EBV infection and importantly, about five years before their Ms. Diagnosis. The research team also tested four blood samples from this subgroup. These blood samples were drawn at nine month intervals following the time of their EBV infection, and an analysis of these blood samples showed that the people with consistently high levels of the EBNA1 antibodies were the people who were at the greatest risk of developing Ms. Later on. Specifically, high antibody levels in two or more samples over the three years after the EBV infection was observed in 96% of the people who went on to develop Ms. And only 5.6% of the people who did not develop Ms. Statistically, this means that people with high antibody levels in at least two blood samples following their EBV infection were 400 times more likely to develop Ms. Put plainly, someone for whom high levels of the EBNA1 antibodies are detected at least twice after being infected with the Epstein Barr virus will likely develop Ms. In the following years, and someone with consistently high antibody levels in blood tests following EBV infection will develop Ms. More rapidly. This represents an important development that may lead to proactively screening people who may already be at risk for developing ms, for instance, people who have had mono or those who may have other family members who are already living with Ms. Like all research, this antibody test needs to be validated, but it's a step closer to a simple blood test that could predict Ms. Years before it develops, and that opens a door for proactive treatment before someone experiences even a single Ms. Symptom. If you'd like to review the details of this study, you'll find a link in today's show. Notes.
- [06:40]
A scientific team supported in part by The National Institutes of Health has developed a new ultra high resolution brain imaging system that can reconstruct microscopic brain structures that become disrupted or damaged in neurological brain disorders. This scanner fits snugly around a person's head and it has many more channels than typical MRI systems, which allows it to produce much sharper images of very small biological brain structures. Now, this is something that's never been possible, and until now the scanner has been proven safe through testing with human research volunteers. And it's a tool that's going to enable scientists to develop a complete wiring diagram of the brain, which opens the door for future advances in precision neuroscience where non invasive brain stimulation that's been tailored to an individual's unique brain circuitry may help treat brain disorders. This project was partially funded by the National Institutes of Health Brain Research through Advancing Innovative Neurotechnologies Initiative, a very long name that's most often referred to simply as the BRAIN Initiative. Unfortunately, the BRAIN Initiative has seen its funding from the federal government cut from $680 million in 2023 to $402 million in 2024 to $321 million in 2025, and the project funding is set to drop to zero in 2026. Now, having $321 million available in the 2025 budget doesn't mean there won't be ongoing research among the many projects associated with the BRAIN Initiative, but it does mean that there will be less research, which leads to less discovery, which leads to less progress. And that's the very sad part of this story. And it's a part of the story that we may hear repeated in the months and years ahead.
- [08:54]
Including the patient Voice in the FDA's regulatory review process for new medications is an important aspect of the 21st Century Cures act, which was passed by Congress and signed into law by President Obama in 2016. The overall aim of the law is to accelerate discovery, development and delivery of new medical treatments and mandating patient focused drug development Meetings with the FDA codified the concept of patient focused drug development by formally integrating patient experiences and perspectives into the drug development and regulatory review process. On October 29, the National Ms. Society is leading the Shaping Tomorrow Together initiative, an interactive patient focused drug development meeting that will be held in person, by invitation in College Park, Maryland and also streamed live on Zoom. The meeting will ultimately lead to the publication of a Voice of the patient report in 2026. If you're interested in learning more about how you might participate in this meeting, the Ms. Society is hosting an informational webinar next week on July 29th at 1:00pm Eastern Time. So if you'd like to learn more, your first step is registering for this informational webinar and you'll find a link to the online registration in today's Show Notes.
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Crush Ms. Is one of my favorite fundraisers for Ms. Ms. Research. Besides raising money that supports the International Progressive Ms. Alliance, Crush Ms. Always provides me with a good reason to visit Napa Valley. And if you're looking for a good reason to visit Napa, I hope you'll join me at Crush Ms. This Saturday, July 26th. You'll enjoy great California wines from over two dozen Napa Valley wineries. There's fabulous food, live music, an amazing silent auction, and what better way to support Ms. Research than by spending a Saturday afternoon in a vineyard? You can visit crushms.org to learn more or purchase your tickets to Crush Ms. And you'll find that link in today's Show Notes there's considerable evidence that the moderate consumption of red wine offers a long list of health related benefits. And I'll say right up front that the key phrase here is moderate consumption. There's absolutely nothing healthful about over consuming alcohol, and that includes wine. But in moderation, those benefits are real. And one of the potential benefits is longevity. Now just imagine you're benefiting from that longevity and somewhere in your 50s, 60s or 70s, you're diagnosed with MS, while more people are being diagnosed with late onset Ms. Than ever before. And in a moment we'll meet my guest, Dr. Jacqueline Nicholas, who's joining me to help us understand what late onset Ms. Is all about.
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Being diagnosed with Ms. Later in life can be perplexing. You may find yourself feeling confused about symptoms, treatments, and wondering what happens next. And it can be tricky trying to determine which changes in your health may be caused by Ms. And which are simply part of getting older. Dr. Jacqueline Nicholas is here to help us better understand what late onset Ms. Is all about. Dr. Nicholas is system Chief of Neuroimmunology and Multiple Sclerosis at the Ohio Health Multiple sclerosis Center, and Dr. Nicholas also serves as an Adjunct Clinical Assistant professor of Neurology at the University of Toledo College of Medicine and the Ohio University College of Medicine. Welcome back to the podcast, Dr. Nicholas.
- [12:57]
B
Hi John. Thanks so much for having me again.
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A
I'm hoping you'll start us off by explaining what late onset Ms. Is and how it can be different from being diagnosed with Ms. At a younger age.
- [13:09]
B
Sure. So late onset Ms. Is when somebody is diagnosed or presents with Ms. At the age of 50 or older. And, you know, typically people are presenting with Ms. Sometime between their 20s to 40s. Of course, we know about 5% of Ms. Can present in childhood, and we know now that about upwards of 5% of Ms. Presents as late onset Ms. And so, you know, we're seeing this more and more in the clinic where we're seeing people presenting later and being diagnosed at this later age. And these individuals often tend to present with more of a progressive phenotype type with a gradual worsening of neurologic function over time. And we tend to see that these individuals with late onset Ms. Often have more disability at the time of diagnosis. And traditionally that's more likely to be motor symptoms, so weakness or trouble with walking, and often also have sensory symptoms as well. And so it's definitely a, a large part of the care that we're providing in this group. And we know that we need to do a lot more research to optimize their care.
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A
Is it possible for someone to have experienced mild Ms. Symptoms for years before being diagnosed later in life? I'm wondering if perhaps they experienced a relapsing phase of ms, but their symptoms were so mild and perhaps so spread out over a period of years that it went unnoticed and certainly undiagnosed until perhaps things progressed a little bit as they aged.
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B
Absolutely. And I think this is really common and mostly because, you know, some of the symptoms of Ms. May be mild, so somebody may, you know, experience some fatigue and blame it on other problems or other reasons in life, or they might experience some numbness and be told that they had a pinched nerve or some peripheral nerve issue. And, you know, some of these individuals may experience something and when it goes away after a couple days or weeks, they, they may have just been busy and, and not thought that it was important enough to seek medical attention. And so many of these individuals may ultimately be presenting when these problems have become more significant in older age.
- [15:45]
A
Say someone comes in for an annual or maybe semiannual check in with you, and they're a little slower in their 25 foot walk. Maybe their balance isn't the same as it was a year ago. And let's say this patient happens to be 64 years old. Are they showing signs that their Ms. Is progressing or are these signs that they're just aging?
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B
Yeah, so I would definitely be concerned about the possibility of progression in this individual, especially if I'm noticing that their walk is a bit slower, their balance is a little worse. But I think I would really want to tease it out more. I may gather from what they're sharing with me that maybe they had some other medical issue and they weren't as physically active over the past few months. And that has led to this difference in what we're finding. Because of course, as humans, we can have other medical problems that play a role in how we're functioning. I think that really digging in deeper and doing a neurologic exam, as well as taking that clinical history of understanding what that individual has been going through since the last visit is really important as well. There's also some other factors that we have to take into account. You know, sometimes if I see somebody later in the day, as opposed to earlier in the day or right now in the middle of the summer when the heat is really, really high, I tend to see that some of my patients have a little bit different function levels than they normally do. And so I think it's important to put all those pieces together to really understand. And of course, we know there are some things that will gradually worsen as we age. No matter who we are, our brains are shrinking as we get older. That's part of normal life. And so we may find some subtle changes. But I think that if I'm seeing, you know, findings that are worsening on the exam, like weakness or, you know, significant balance or walking problems in somebody with ms, I would be much more concerned that this is progression from Ms. Than normal aging.
- [17:57]
A
Someone is diagnosed with Ms. At a younger age, they're prescribed disease modifying therapies and they've been shown to delay progression. What about someone who's diagnosed later in life? Are disease modifying therapies going to be effective for them?
- [18:14]
B
Well, that is a really important question, and I definitely am asked that quite frequently by my patients. We know that there are two disease modifying therapies that are currently FDA approved that have been shown to have benefit in progressive Ms. The, you know, ocrelizumab being the first and only FDA approved treatment and primary progressive Ms. To show benefit, and then Suponimod, which was actually looked at in a secondary progressive Ms. Population. One of the challenges though, when we look at our clinical trials is that the majority of our medicines for Ms. Are being looked at in largely a younger population. The enrollment age for most studies is 55 and under, and it definitely doesn't allow us to thoroughly study these individuals who are coming in later than that as well. And so I also think that it really depends on what's driving that progression. We know that there are a number of factors that are Impacting progression. And that can be, you know, somebody who has had prior damage from inflammatory lesions in ms, as well as that overlying atrophy that I mentioned that happens with normal aging. But then there are other factors that we see happening in progression where there's this inflammation that we're not as good at detecting with our traditional MRI methods, But with more enhanced methods, we can see where there's this neurodegeneration or this slow dying off of neurons happening with time. And really our hope is that some of the therapies that are currently under study and that are on the horizon will maybe have a better impact than the therapies that we have currently. But I would say that in general, individuals coming in with late onset Ms. Would still likely be offered a disease modifying therapy. But it's very important to look at their own individual health history and to know what problems they have, because some of our therapies do have more risks in individuals who are older particularly. We get concerned about infection, especially if these therapies are suppressing the immune system. And so there may be certain treatment options that we're more likely to offer as a result. But I think the challenge, of course, is that our therapies have been shown to reduce or slow the disability progression, but not stop it completely. And so it can be very hard for that individual taking a medicine to know if they're doing better than they would have if they didn't start the treatment to begin with.
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A
As we age, it's not unusual to develop other health conditions. How do these comorbidities complicate diagnosing and treating late onset ms?
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B
Right. So it is a challenge because, you know, Ms. Isn't the only thing going on as we age. And many individuals as they age, are more likely to develop problems like high blood pressure, hypertension, or even diabetes, high cholesterol. We know that these medical problems in particular can cause damage to the brain. They can even cause tiny white spots in the brain from essentially damage to the tiny blood vessels. And sometimes when an MRI is ready, a radiologist might say that it's possible it could be demyelinating disease. And so, you know, sometimes we will see individuals referred to the Ms. Center where the MRI is. What led to this question? And, you know, we really are being very careful not to make a diagnosis in somebody who truly doesn't meet the diagnostic criteria and to really sort out what is what we call small vessel disease or damage to the brain from problems like high blood pressure and cholesterol, diabetes versus what is True Ms. But of course, somebody with Ms. Could have both problems. And so it's very important that we're taking that very detailed clinical history of what they've experienced in their life, doing an exam, getting MRIs and other testing to rule out these mimics. We know that if somebody has Ms. And they have these other health problems, that it's really important that we optimize the management of those issues. So, you know, if I see somebody coming in and they have high blood pressure, sure. Even though I'm not their primary care, I'm going to talk to them about it and say, hey, you know, are you checking your blood pressure every day? When's the last time you saw your primary care doctor? Because we know if we get better control of that blood pressure and make sure that the cholesterol is being managed and the blood sugars, if they have diabetes, that person is going to have better brain health. Whereas the individual who isn't getting good care for those medical problems, they can have an accelerated course of Ms. Well.
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A
While we're talking about someone's overall health, we should probably also address their overall well being. I'm wondering if you can recommend some ways for older adults with Ms. To stay active and involved even as their abilities may be changing.
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B
Absolutely. Well, I think that having connections is one of the most important ways to have great well being with aging and especially with Ms. You know, as you mentioned, if somebody is experiencing physical limitations or some cognitive memory limitations, sometimes they start to withdraw from the community and that can lead to a decline in physical activity and therefore worsening of Ms. So this is a really important part of Ms. Care. And I find that individuals with Ms. Oftentimes can have a good sense of connection through their families if they have a good support system. We talk about how, you know, going to dinner or talking to family on the phone, that is a cognitive exercise and having that socialization is really important. We also talk about depression and anxiety and how mood disorders are much more common in Ms. Than in the general population and how it's really important that we address those because those disorders can actually worsen the symptoms that people experience with Ms. And so that might involve, you know, having a counselor or a psychologist to be able to talk about what they're experiencing and really help them to do the best that they can with those mood issues that also may involve medication. Additionally, the exercise component is incredibly important. I think that exercise is as important as disease modifying therapy. We know that people who exercise with Ms. Tend to maintain their level of function much Better. We know that there's positive effects of exercise. We get endorphins that boosts our mood and our energy. But sometimes you're right. It can be really hard when you have Ms. And you have some limitations to know, how can I exercise? Or where do I go? Because the typical gym may be a little bit scary because maybe these are, you know, bodybuilders or people that you imagine there. And so one of the ways that I often find good sources for my patients with Ms. To be able to connect and exercise is through our neurorehab team. So physical therapy and occupational therapy, that's a good way to get somebody started who maybe hasn't been exercising or wants to start, and then connecting them to other resources. There are a number of experts who provide online platforms if somebody has trouble with transportation outside the home, and that can be very engaging. And there are also local resources through things like Silver Sneakers or the YMCA or even local gyms where groups can get together. And so I think it's just really important to understand that no matter who you are and no matter what level of physical activity you have from Ms. Or what your impairments are, that there are ways to still exercise. And so it doesn't mean that you have to go to a gym and, you know, run on a treadmill. You can exercise sitting in your chair. You can't exercise if you only have movement of one arm. So there are a lot of things that can be done.
- [26:56]
A
How might the emotional impact of an Ms. Diagnosis later in life differ from what someone might experience if they were diagnosed in their 20s or 30s?
- [27:08]
B
Right. Well, I think that it can be very surprising. Many people who are diagnosed with Ms. Later in life really question that diagnosis, and rightfully so, because they may have read online that, hey, these are spring chickens that come in with Ms. In their 20s to 40s. And why am I now at the age of 60, having this problem? Are you sure that's what I have? And so I think there's that initial questioning phase, and then also that fear that I'm older. What does that mean for my life? And I have worked all these years, and now am I not going to be able to do the things that I had planned to do, perhaps in my retirement or maybe I want to continue working? And so I think there's a lot of.
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Shaking up of one's identity as well, when they have this unknown difficulty of knowing what their course is going to be like. And so I think we can really talk them through that and help them to understand that, you know, they do have things that they can do to fight back against Ms. And that, you know, connecting them to others who have this disease and maybe also develop this disease later to understand how they have handled it and to have that sense of community can be really helpful. That's not to say that if somebody gets diagnosed at a younger age that it's not shocking as well. But I think that in younger people there tends to be more treatment options that may be available to them or where the research has been done, more in younger groups. And so they may have a lot more resources and hope. But I think what's important to realize is that we know that people with Ms. Are living longer, thankfully, because of the research that's been done, and that there is so much support out there that can be done for people with Ms. No matter what age they're diagnosed.
- [29:09]
A
Well, Dr. Jacqueline Nicholas, I want to thank you for all you do to improve the lives of people living with Ms. And thanks so much for talking with me today.
- [29:18]
B
Thanks so much, John.
- [29:20]
A
That's going to wrap up this episode of Real Talk Ms. Real Talk Ms. Is powered by the National Ms. Society, and you can share this episode of the podcast by letting your friends or family members know that all they have to do is point their web browser at@realtalkms.com 412. You'll find that link in today's Show Notes, so you can easily copy and paste it right into an email or a text. And if you have a minute, I hope you'll visit the Apple App Store or the Google Play Store and Download the free RealTalk Ms. App for your iOS or Android smartphone or tablet. It's the best way for us to stay connected. The app will automatically download the latest episode of Real Talk Ms. You'll be able to access any of our past episodes, you'll be able to save your favorite episodes, and it's a great way for me to share bonus content with you. The app is free, so I hope you'll download it today. I'm John Strum. Thanks for listening. Stay safe and make healthy choices.