Season 5 | Episode 8

 

Joe McIntyre (Host): Welcome to the Merck Manuals Medical Myths Podcast. On this show, we set the record straight on today's most talked about medical topics and questions. On this episode, we're taking a closer look at multiple sclerosis, also known as MS. I'm your host, Joe McIntyre and I'm joined today by Dr. Michael Levin. Dr. Levin is a professor of medicine at the University of Saskatchewan in Saskatoon, Canada, where he is the inaugural Saskatchewan multiple sclerosis clinical research chair. Today, we will explore MS and the myths and misconceptions surrounding the disease. Dr. Levin. Thanks for joining us.

 

Dr. Levin: It's a pleasure to be here. Thanks for having me.

 

Host: Of course. So first off, can you tell our listeners, who may not be familiar with MS, what exactly it is, how this disease works, maybe how it comes to be? - just kind of an overview.

 

Dr. Levin: Sure. So, it's a neurologic disease and it affects fairly young people, it's most commonly diagnosed in people in their 20s to 40s. It has three components, and we will talk about them throughout the session. The first one is that it's inflammatory, or autoimmune, and that means inflammation or our immune system that's there to protect us instead (and there's the brain and the spinal cord) begins to damage it. So that's the inflammatory part, it damages the brain and spinal cord in two ways. First, it damages the myelin. And myelin is a coating on nerve cells, very similar to the coating or the insulation on copper wire. And so the myelin is important so that the nerve cells work well together. And so you may have heard the term demyelinating. And so the inflammatory cells damage the myelin. And then, of course, underneath that myelin is the nerve cell itself. And the nerve cells also become damaged.

 

But really, so those are the three pieces. But what does it look like in people? It's a relapsing-remitting disease. And that means people have acute attacks of neurologic dysfunction. So, one of the most common attacks, also known as a relapse, that people come to the doctor for, is loss of vision in one eye. That's called optic neuritis - it's inflammation behind the eye. And people lose vision over the day. And that's separates from stroke, where you would lose vision in one eye in a matter of seconds, or maybe a minute in MS it’s much more slower than that. And because it can affect anywhere in the brain or spinal cord, then you can get symptoms all over your body and that's why it's so variable in people. So, we've talked about optic neuritis, loss of vision in one eye. If you had inflammation in your spinal cord, then both your legs might become weak or even numb. So those are two common ways people develop MS. But I also want to emphasize its relapsing and remitting, and the remission part is that after an acute attack, which may last a couple of days, or even a couple of weeks, then people can come back to normal earlier in the disease. So, it's a bumpy road. And these relapses occur randomly throughout someone's life.

 

Host: Dr. Levin, do you know how many people worldwide or even in North America are diagnosed or have an MS diagnosis?

 

Dr. Levin: There are almost 3 million people worldwide and about a million in North America. I think it's about maybe 900,000 in the US and about 100,000 in Canada. Again, the prevalence rate is one in 3,000 worldwide, one in 1,000 in the US and one in 300 in Canada and other parts of the Northern Hemisphere.

 

Host: How might someone know if they have MS, what should they be looking out for, if anything, how often should they go to the doctor? Who should they see - anything there?

 

Dr. Levin: Yeah, I mean it can be tricky early on, because again, as symptoms get better on their own, and so patients and people tell me or will say, “My left arm became numb for a week or two but it slowly got better and so I didn't have it looked at,” or, “By the time I got into see a doctor, either a primary care doctor or a neurologist, those symptoms were gone”. And so that makes it tricky to diagnose. But the things to look out for, as we've talked about one already - loss of vision over the day, that doesn't get better on its own that lasts anywhere from a couple of days to a couple of weeks - that needs immediate attention. You should probably go to the emergency room for that. And then if both legs get a little bit numb or tingly, or feet get numb or tingly and then after that your arm or hand goes numb and tingly. We talked about MS being relapsing and remitting, so symptoms come and go. So again, loss of vision, numbness in one part of your body, weakness in one part of your body, or numbness and weakness in both legs are really, really common.

 

The next step is to see a health care provider as quickly as you can because we can diagnose people really early now. The physician or healthcare provider will take a very close history and do a physical exam. But the most sensitive test to diagnose MS is MRI scan. If you could choose one, I would recommend an MRI scan of the brain. But typically, we would do an MRI scan of the brain and the spinal cord, because MS affects both. And we can now diagnose people very early. So, you go through those episodes, and you get to the doctor and you're normal, you feel well and that has resolved, we can still see those areas of damage on the MRI scan. We've talked about the damage in myelin and the damage of nerve cells. Those areas in the brain and spinal cord are called plaques, it's its own thing. A lot of things in the human body are called plaques. But this is an MS plaque that we can see it on MRI scan, we can see it very early in disease. And we can see it even when people no longer have symptoms.

 

Host: Now, this is a podcast where we discuss myths quite often. So, let's get maybe a big question out of the way. I think there's a lot of fear with MS. At least there certainly was many years ago, but is an MS diagnosis fatal or death sentence? How treatable is it maybe now compared to years ago or just in general?

 

Dr. Levin: So it's rarely fatal, especially early in its course. I think the biggest myth I want to dispel is that MS is some type of guarantee of a lifetime of disability. That was true, it's no longer true. There are more than 20 medications on the market, your health care provider will find one that fits your lifestyle and how you want to take the medications. And in the last five years, we've invented what we call high efficacy medications, medications that work really well. And if caught early enough, these medications can really nip a disease in the bud. And so, one myth I want to dispel is that there's no guarantee that this is going to be a lifetime of disability - quite the contrary. If captured early enough, most of my MS patients live full and active lives.

 

Host: Relief for a lot of people I'm very sure, that's great. I mean, I think you kind of dispelled it there. Certainly, not everyone with MS ends up in a wheelchair, with a cane, or some sort of support for a disability. But I guess if that were to be the case, would that be mostly because it would be diagnosed too late in life? Is there any correlation there?

 

Dr. Levin: The later you get on medication, the less effective they are. And this kind of opens up a little bit of the types of MS in that we've talked about relapse and remitting MS. Eventually, those relapses go away. But people still slowly get worse, what I call ‘the dwindles’ - trouble walking as quickly, maybe can’t keep up with your golf game, trouble with urine control and that kind of thing. And that happens after the relapsing phase, where people slowly get worse without those relapses. It happens secondarily. And so that's called Secondary Progressive MS. No great meds for that yet. And then there's Primary Progressive MS. The third kind of MS, where people slowly go downhill usually have trouble walking early, they never get that attack phase. And there's no medications for Primary Progressive MS yet.

 

So, to get back to your question, and people who are already in a wheelchair, or might be headed in that direction, sometimes those patients have gotten to the health care provider or their health care system too late. So, the lesson is, get diagnosed early and get treated early. There is the rare patient that has such an aggressive form of MS early on that it's very, very difficult to treat. That's the vast minority, but it still happens.

 

Host: Does MS occur more in women than men? Is that the case?

 

Dr. Levin: It does, about two to one. And so yeah, all autoimmune diseases from lupus and thyroid disease occur more common in women. And MS is autoimmune. And so, women are at twice the risk of men.

 

Host: Is MS an inheritable disease?

 

Dr. Levin:  A small amount. And so, if you look at risk, the risk worldwide for MS is about one in 3000. The risk in the US is one in 1,000. The risk in Canada is one in 300. And if you have a first degree relative with MS, your risk is about one in 50. So, it does increase your risk, there's still a high probability that you won't get it, but it can go from as high as one in 3,000 to one in 50. And that's a mixture of genes. It's not one gene, we don't understand all the genetic predispositions. So, it has a mild but definite inheritable risk.

 

Host: Now, you mentioned that there are a number of different treatments for this, what do those treatments range from? Is it just medication? Is it some sort of physical therapy? What does that also include?

 

Dr. Levin: I think first, again we talked about MS being inflammatory and autoimmune, so all the medications suppress the immune system to some degree. The idea being that if you can prevent the immune system or inflammatory cells from entering the brain, or if they're in the brain already, if you can get them to quiet down and suppress them, you'll help MS.

 

So, they're all in that category of what we call immunosuppressive where they dampen the immune system, or immunomodulatory or immunomodulation, where it shifts the immune system from attack mode to rest mode. Okay, so they all fit into that category.

 

That being said, a healthy lifestyle is important. We know from a lot of really good studies that smoking can make your MS worse. Obesity and being overweight can make your MS worse. And what I like to tell my patients is that if they're struggling a little bit, the minute they're struggling, they should make a long-term relationship with a physical therapist, because there's no doubt that physical therapy plays a critical role in maintaining people's health and maintaining their activity for as long as possible.

 

Host: So, you mentioned the importance of living a healthy lifestyle, I assume that means if you have MS, you are not prohibited in any way from exercising, from walking, from doing the things typically, especially if it's diagnosed when you're younger, that you used to do in your pre-diagnosis life.

 

Dr. Levin: I mean, actually, quite the contrary, there are studies to say that exercise helps MS. In fact, in our animal models of MS, exercise when we look at it, we can give mice a disease that mimics MS. When we put them on treadmills and we exercise mice, they actually get better. And so, there are actually clinical trials looking like that. The only thing you have to be concerned about with MS is safety. And so, if you're having an issue with balance, you know, I'm not sure the balance beam would be the best exercise for you. So as long as you take safety into account, there are no limitations to someone exercising. And quite the contrary, it will not make your MS worse, it'll keep it stable. It might even make it better.

 

Host: Got it. Now, you mentioned also earlier that it seems to be a different disease for individual people. I'm sure there are big ranges from one person to the other in how it affects them. What are those ranges? I assume not everybody with MS has the same effects. But how does that really go about happening?

 

Dr. Levin: It's very variable. So, we talked about how it's a disease of the brain and spinal cord, which affects almost everything we do. Depending on where those plaques are and depending on where those areas of damage are, is why people's symptoms are so variable. That's number one. Number two is there are some risk factors for people progressing quickly. Men tend to progress a little more quickly. And by progress, I mean, get worse over a shorter period of time, making it worse more quickly. The more attacks you have earlier in your disease puts you at risk of getting worse, as well. And it's really highly variable. I see people that it may only attack their vision and so vision is a big issue but everything else is okay. And then I see people where it really attacks the spinal cord. You know, all the information from our limbs goes through our spinal cord, so a small plaque, an area of damage in the spinal cord, can cause trouble with walking and balance and coordination of the hands and legs. And part of neurology, I always say, is like real estate: location, location, location - it's not only the number of plaques you have in your brain and spinal cord, but where they are. Because a lot of what we do, as humans, is actually in our subconscious or unconscious. And if MS affects that part of the brain, you may not be very aware of it. But you can imagine a plaque in the middle of your spinal cord could make both your legs weak. And so that's why it's so variable. It's really location, as much as it is number or quantity of plaques in the brain or spinal cord.

 

Host: For a woman, obviously, you said they're about almost twice as likely to be diagnosed as men. Does it affect their ability to get pregnant if they have MS.

 

Dr. Levin: You know, yes and no. MS does not put you at risk for not getting pregnant, doesn't put you at risk for having a miscarriage or none of those things. We work with women all the time, with family planning and trying to plan their pregnancies, usually they're put on an MS drug to try to make the disease quiet and then most people have to be taken off that drug during their pregnancy. And then as soon as the pregnancy is over, we put them back on those MS medications. Now there's some exceptions. There are some medications we can actually give during pregnancy. And the nice thing about pregnancy in MS, it's actually protective. So, the relapse rate goes down during pregnancy. And then after you deliver the baby, then your baseline comes back so you need to see your healthcare provider.

 

So, my recommendation is, I tell women, if you want to go make babies,  if that's what you want to do, we will help you through it. We'll talk to your obstetrician; we will play with your meds, and we will get you through it. And so again, my goal is to have people with full and healthy lives, and if having a family is part of that it just needs to be planned a little bit more carefully. But there's no reason women cannot have children.

 

Host: Let's say you have a friend or a family member who was diagnosed with MS or has MS. Is there something or anything that you can do or should do as a friend or family member to support them to be more knowledgeable about it? What would you kind of recommend, or for a spouse even, what would you recommend they think about or how they react to this?

 

Dr. Levin: I think first thing, you know, see a healthcare provider early and often. Get the diagnosis, something that's a commitment. You want to make sure it is MS because there are things that can mimic MS. So that's the first thing I would recommend. You know, that first year, I think psychologically, is tough on people with MS and that's where they need support. I mean, think about it for a minute, those relapses or attacks come randomly; we can't predict them. And so, I always tell people with MS it takes about a year to get used to the diagnosis. The average relapse rate in an untreated MS patient is about one attack per year or one attack every two years. So, you're going to feel well, most of the time, but just having that fear every day that you might wake up in the middle of an attack is difficult. So, I think one: support that person psychologically, two: encourage them to go to health care providers, three: use credible sources on the internet.

 

Almost every country or every part of the world has their own MS Society and that's where to get the most accurate information. And if they don't feel well, call their provider if they think they're having a relapse, call their provider that day. Don't wait. And then I guess the other thing is just be patient with that friend or family member. They're going to have relapses, so you could be planning a vacation or planning something, and they may not feel well enough to go that day. And I would just say be sensitive to that.

 

Host: That’s great advice. Dr. Levin to close us out, you mentioned MS Society is a great resource. Where specifically, or where else would you recommend folks go for more information about MS - about the disease, about treatments, all that kind of stuff.

 

Dr. Levin: In the States, the National Multiple Sclerosis Society is great. In Canada it is called MS Canada, the name of their MS Society. And there's one in the UK and then there are several across Europe and other parts of the world.Besides the MS societies which are scattered throughout the globe, I think the Merck Manual gives really understandable information that's digestible and very accurate. And then finally, local support groups I think played a really important role.

 

Host: Well, Dr. Levin, thank you so much for joining us on this podcast. Certainly, it was a great conversation busting some of the myths around MS. I really appreciate you being on. So, as we close out, I'll let you leave our listeners with the final word.

 

Dr. Levin: Medical knowledge is power. Pass it on.