Multiple Sclerosis: Expert Q&A
December 14, 2020
[MUSIC PLAYING] Hello, and welcome to At the Forefront Live. Multiple sclerosis is a chronic autoimmune disease of the brain and spinal cord. While the exact cause is not known, we do know that MS causes a person's immune system to damage the protective covering of nerves. This leads to interruptions of nerve impulses that travel to and from the brain and spinal cord. Dr. Adil Javed and Dr. Anthony Reder have dedicated their careers to studying new ways to diagnose and treat MS. You will have the opportunity to ask these experts your questions about MS. That's coming up right now on At the Forefront Live.
And we want to remind our viewers that today's program is not designed to take the place of a visit with your physician. Now, let's start by having each one of you introduce yourselves to our audience and tell us what you do here at UChicago Medicine. And Dr. Reder, you are right next to me, so we're going to start with you.
OK. So I'm a professor of neurology, and I've been studying MS here since the early '80s. And we've made huge advances in treating this disease and understanding it. And we'll get into that in a minute.
Hello, my name is Adil Javed. I've been here since 2004 studying multiple sclerosis. And we have also learned many variants of multiple sclerosis, not just the multiple sclerosis. And over this period, I think we can identify diseases that are related, but very separate from multiple sclerosis. So we have advances in not only diagnosis, but appropriate treatment and new treatments for these set of diseases.
We want to remind our viewers, you can ask our experts questions. So just type them in the comments section, and we'll get to as many as possible over the next half hour. Dr. Reder, we're going to start with you. And we're just going to start off in kind of a broad way. If you can describe to us what exactly is MS.
It's a uniquely human disease. There are no animal models, no animal instances of MS anywhere. And it's a strange phenomenon. It's an immune attack against the brain. The cause is unknown. Most of the triggers are unknown.
And these intermittent attacks can destroy any part of the brain, sometimes permanently, but usually just temporarily. For two or three weeks, people will have difficulty seeing in one eye, have some weakness, have bladder problems, feel fatigue, have some balance problems, and then they go away. And what we're trying to understand is what causes multiple sclerosis, and how best to treat it.
Dr. Javed, are there any warning signs that people can look for? Or is this something that generally just happens to people out of the blue?
There are certainly warning signs. There are certainly focal symptoms of multiple sclerosis that are very acute to sub-acute onset. And these include abrupt vision loss or slow vision loss over two to three days, and weakness in one limb or the other, or ascending numbness or weakness from the feet all the way up to the chest and above. So balance problems, gait problems, weakness, sensory loss, vision, these are focal symptoms of multiple sclerosis.
In their background, I think we also see other rather diffuse symptoms, such as cognition problems, memory problems. So these are a bit more diffuse. Excessive fatigue is also a bit diffuse. So there are focal symptoms that are certainly the warning signs. And in the right age group, younger age group, and with these symptoms, especially if they are developing over weeks or even maybe a month or two, requires a prompt neurological evaluation in a hospital or clinic.
So you say a neurological evaluation. So how is this diagnosed?
So there's diagnosis that is, a patient is seen in the clinic. So there's a set of symptomology, the vision, the weakness, or the sensory loss. There's a pattern. There's a very select and specific pattern that we look for. In addition, we confirm this pattern by an MRI.
So patient symptoms, examination of the patient, and MRI is needed to arrive at a diagnosis of multiple sclerosis. Rarely, we do para-clinical testing, such as laboratory work, spinal tap which aids in the diagnosis. But in the vast majority of the cases, it's the symptoms, the exam, and the MRI that is very, very helpful.
And as promised, we are taking questions from our viewers. And Dr. Reder, I'm going to throw this one to you. Our first question is from Annie. And she asks, is it possible to have MS with no obvious plaques on the brain?
Usually not. The MRI is very sensitive, but it involves more than just the brain. It can involve the spinal cord. And especially in the thoracic, you know, the spinal cord and the chest, it's the size of a pencil, and it's very hard to see on MRI. So people could have balance problems or bladder problems, and the spinal cord lesion might not be seen on an MRI.
We have the advantage of there are 10 MRI lesions per symptom. So usually the MRI is very helpful, because it picks up a lot of unknown spots. But there are occasional people who have what I consider classic MS symptoms who have quite minimal lesions on their brains. And on the other end, there's people with huge numbers of lesions on their brains, who seem pretty normal. And this goes back to what Annie was suggesting, is there is some dissociation between what you see on the MRI and what the symptoms look like.
So Dr. Reder, I'm curious, you know, Annie mentions plaques on the brain. You talk about lesions on the brain. What exactly are you talking about? Is that something that you physically see when you do the MRI?
Right. And so Dr. Javed is the main MRI expert here. But classically, in MS-- and the first MRI scan appeared in Chicago in 1986, which was a huge change in how we diagnose the disease. But on some of the images, there's a bright white spot, which is the water inflamed area of the brain in this small lesion the size of a quarter or a penny. And that shows up as a white spot.
Sometimes there are more permanent sites of damage, and those actually turn dark. And they're called black holes. And the white spots often resolve, at least partially. And people do pretty well in those areas. But the more severe damage does not resolve. And that's why it's very important to diagnose and treat MS as early as possible.
So Dr. Javed, this is more of a statement than a question from one of our viewers. This is apparently a fan of yours. This is Latisha, and she says, good day, Dr. Javed. You diagnosed me on 5/5 of 2020, and got me started on the newer DMT. Praise God, all is good. Thank you for all your help, especially during these uncertain times. So, that's nice to hear that. So that's great.
Thank you so much.
So Dr. Javed, can you talk to us a little bit about your work? And I believe, was it was Dr. Reder just said, that you kind of have a special area of expertise. And describe what you do and how that works with these MS patients.
So I think one of the main issues is looking at the lesions in multiple sclerosis. So you have patients with a plethora of symptoms. And a lot of times the diagnosis, in many times, is based on the MRI. Now you can imagine that if it picture is a high quality, high resolution image, you can see better these lesions, which are very important in, not only diagnosis, but also following patients over time, to make sure if there is an MRI sub-clinical progression, we jump on it very quickly and alter the course early on before a patient becomes symptomatic.
So my research and my goal is to develop and help, with our radiology group, develop this high-resolution imaging. Because lesions and looking at these lesions matters the most in following progression of the disease. So if there's a low quality MRI, you're not going to be able to pick up the disease very readily. And the patient may be a bit more advanced before you start to realize there's something going on.
So I have developed with our radiology group high resolution techniques to look at these lesions, not only the white matter, which is easily seen on most images, but also something called the gray matter, which is difficult to see on these routine MRI-- the standard MRI techniques. So we have a protocol to really differentiate the gray matter and white matter. And we look at all the lesion that we can possibly see.
So Dr. Reder, I couldn't leave you out. Hanna just made a comment, and she says, two of the best doctors I've ever worked with. So, you guys are both getting a fan club going here it looks like. So another question from a viewer. Labrina asks, so I have MS, and I've had two lumbar punctures. And both have no bands present. Is that normal for an MS patient? And Dr. Reder, if you can maybe weigh in on that one.
Not normal, but possible.
So the bands, which are antibodies in the spinal fluid, show that there is some inflammation. And I mentioned at the very beginning that this is the immune system out of control. And probably 95% of MS patients with the classic forms of MS have these only oligoclonal bands in their spinal fluid. So possible, but when they're not there, we have to be very careful about making the diagnosis of MS.
So I want to give viewers just a little bit of a behind the scenes. Before we actually started the program, Dr. Reder and Dr. Javed and I were speaking. And we were kind of talking about the audience. And Dr. Reder was asking some questions about the audience, and we were talking about how intelligent our audience normally is. And I think this is a great example, because we have people who are certainly very well informed asking great questions. Keep them coming. We'll continue to try to get to as many of them as we can throughout the show. And I thank you for the questions so far.
So here's kind of a broad question. And I don't know who wants to take this, maybe both of you want to kind of tag team this one. But how is MS treated? What do you do for patients?
So I can start. So there are two types of therapies. There is the mitigation of the abnormal immune response. Dr. Reder eloquently mentioned that the immune system in multiple sclerosis is out of control. And these immune cells are the ones that are damaging the myelin. And so one goal is to somehow tame this out of control immune response to go from pro-inflammatory stage to a anti-inflammatory stage in multiple sclerosis, per se.
And the next set of therapies is the swell out of the damaged nerves. So these are symptoms such as pain, numbness, tingling, stiffness we also call spasticity. So these are the symptomatic management after an aftermath of injury. So again, immune therapy, and also symptomatic therapy for pain and bowel, bladder, and other symptoms.
So these are the two broad sets of treatments. And each patient has different symptoms, depending on where the lesion is. So no one patient has exactly the same symptoms, even though we classify everyone as multiple sclerosis. So it's a very unique, heterogeneous disease. And we tailor the treatment by carefully listening to them, again, listening to them, examining them, and tailoring a set of therapies for those symptoms.
So Dr. Reder, is MS curable?
Not yet. We have gotten better and better treatments over the years. And there are now about 18 different treatments for MS in eight different families. And the amazing thing is that they all work, some a little bit better than others. So the other part of this picture is, we think of drug therapy, and we've been pushing the envelope on drug therapy and have more in the works for repair. But the other thing going on is treating the environmental problems in MS. And so, things such as smoking double the risk of attacks and progression. Low vitamin D makes MS worse and makes it more likely that you'll get it. And abdominal obesity can make MS worse. So we try to have more of a holistic-- Lifestyle matters in MS, in addition to these powerful drugs and effective drugs.
You know, I'm so happy you made those points right there, because every one of these programs that we do, we have physicians, scientists that get on here and say two things, you can't smoke. And you need to watch what you eat and your exercise. It impacts everything. And even a disease like this. So I'm so glad you made those points.
Another question from a viewer. And this one, this one's really interesting. Devin is asking, he says, thinking about the quality of life for people living with MS, are there temperature or climate locations in the United States that are more conducive for people who have MS? And that's something that I hadn't thought of before, but I do know there is a bit of a temperature component. Is that correct? I don't know who wants to answer that one. I'll open that up either one of you.
I'll answer that. Yes, I mean, we've seen that the extreme of temperature, it increases symptoms. So if it's very cold weather, in the winter we're heading, there's increasing stiffness in the legs, especially if the patient has a spinal cord disease. So spasticity increases when the weather is cold. And there's weakness, internalized weakness when the body temperature is up because of fever or high temperature over the 90 degrees or so.
So I think we advise patients to stay sort of in the middle, more like 70, 75. And they can do many different techniques to achieve that goal. There are cooler packs. People-- there are cooler jackets. They have some packs that they can stuff in the jackets, neck coolers. So the body temperature can be regulated in this sort of range, depending-- doesn't matter really where you live. But yes, the extreme of temperature is not good for symptoms.
And one other classic thing in MS is that people are very sensitive to high temperatures. Because in the areas where the insulation around the nerves, the myelin is missing, those nerves are very sensitive to an increase in temperature. So hot weather, high humidity, and even the body's own circadian rhythm, where your body temperature goes up in the afternoon, can cause weakness and tiredness in MS patients. And something as simple as a cooling pack, like Dr. Javed mentioned, can actually make people feel a lot better and stronger.
So Kimberly asked, the steroids I've have gotten in the hospital during an exasperation have not seemed to assist me in bouncing back like I hear it will for others. Is that normal? Again, either one of you can jump in on that one. Maybe, Dr. Javed, we go with you on this one?
Yes, so we see over time, the steroid response does diminish. And Dr. Arnason, who is a world renowned neuroimmunologist, has actually studied the effects of steroids in multiple sclerosis on immune cells. And this research has shown that over time, the immune cells actually are not as sensitive to the steroid response in terms of mitigating information. So yes, we certainly see over time, as the disease progresses, the steroid response diminishes.
And also it depends on what type of multiple sclerosis a patient may have. Perhaps they have a different type of inflammation that is not as amenable to steroid therapy as some others. Again, it's a very heterogeneous disease. It's hard to say that the experience of one person would be the same as the other. So it depends on what type of disease, where the lesions are, how active the disease is, and how their disease has progressed over time. So these are all different factors we have to take into account.
So Dr. Reder, Katie asks, can MS affect your menstrual cycle?
Actually, usually not. The endocrine system is pretty extensive in the brain, the regulation. There can be minor effects, like men have lower testosterone levels with MS, and there are occasional menstrual irregularities. But it's surprising to me that we have this plethora of symptoms that I listed at the beginning, and irregular periods are actually not a big component of MS.
So look elsewhere on that one.
So Dr. Javed, Portia is asking, I am 15 weeks pregnant with MS, and would like to know if it's OK to get the epidural in my spine during delivery. I never thought of that one before.
Yes, most of our patients do well with an epidural having multiple sclerosis. So I have not seen any issues in my own patient database who have delivered successfully using an epidural.
That's good news, then, for Portia. And this one is for Dr. Reder, and this is from Carrie. And she says, hey Dr. Reder, my favorite doctor. Is there any additional data on the two COVID-19 vaccines concerning MS patients and the treatments? And that's a great question, because I think a lot of people are obviously concerned with COVID and they're wondering about that. She wants to know if there are any adverse reactions that have been noted, et cetera.
Oh that's a 2 and 1/2 part answer. First of all, it probably should be safe, just like the flu vaccine is safe. Because it's not a virus. These are proteins. And in general, those are pretty safe in multiple sclerosis. The early reports of two people in England developing, one an MS attack and one transverse myelitis, which is the spinal cord MS like lesion, I still don't know the specifics of those. And they could have been random events. But it raises questions. But I think overall, the risk of COVID is so severe in general, that the vaccine will be safe.
The second point is you may wonder whether MS patients are at greater risk with COVID. And they are if they're overweight and have trouble breathing. But in general, the immune system in MS, which is overactive, is so good that people get less cancer and fewer virus infections. And it turns out that when people are on the MS treatments, there's a spectrum. But some of the MS therapies are actually helping to prevent COVID, because they are antiviral drugs in their own. And they cut down on the chance of getting COVID and the severity of COVID. So there's a big spectrum. MS patients, in general, are doing pretty well worldwide.
Good news. So Dr. Javed, you may have to help me with some pronunciations on this one. This is a question from Jerry. And his question was, I was diagnosed with PPMS in 2018, and started on-- and I believe the medication is Osseveris?
Ocrevis, OK. My disability has been progressing quite rapidly, and the three lesions that I had on my C spine at diagnosis have grown, and additionally have new lesions on the brain and T spine. I'm considering HSCT since my options are quite limited. Can you give your thoughts on HSCT.
So HSCT is stem cell therapy. And PPMS is primary progressive multiple sclerosis. So there's a lot of opinions on this issue. Stem cell therapy has been around for a very long period of time. Typically, it has shown the most benefit in the type of MS called relapsing remitting multiple sclerosis that is quite active, meaning that there are new lesions on MRI over time.
So the diagnosis of a PPSM, which is progressive MS, if there is active disease progression, clinical and MRI, then I think an evaluation by a expert in multiple sclerosis is needed. And there has to be a discussion about that. Obviously, stem cell is not a benign therapy. So there are some risks, especially in the COVID pandemic era, when the risk of infections in general is high in stem cell. So I think I would advise the person to seek an MS expert opinion on this one.
And one little follow up on that. The Holy Grail in MS is completely stopping the process, but also helping repair the brain. And we are studying myelin repair drugs right now, trying to find a way to make people get better than they are. But so far, we do not have anything that works in this area.
So Dr. Reder, Katie has a question. And she wants to know about a vitamin regimen to follow. And she lists several things that she does take. She basically wants to know, should we be taking more or anything for our eyes and brain or memory? And what kind of advice would you give there?
So healthy things. Make sure your vitamin B12 is normal. And don't take any vitamins that activate the immune system. Some are purported to do that. You do not want to activate the immune system in MS. But vitamin D is the key here.
A large number of people in Chicago in the winter have low vitamin D levels. And low vitamin D levels are linked to developing MS and to having more attacks and progression when you have MS. And so that's one of the first things we test in clinic is vitamin D in the blood, to make sure that it is at a high enough level. And we like it to be at about 40. The usual bottom is 30, but in MS we like it to be at 40.
And it has a second factor involved in things right now. Because what we found here at the University of Chicago in the ER during the COVID first wave, was that the people who had the lowest vitamin D levels actually were in the hospital five times longer than people with high vitamin D levels. So It's important in MS. It's important in antiviral actions. And part of that lies in how it interacts with interferons, which I mentioned as an MS therapy. But they're potent antiviral drugs. And if you have good levels of interferons and vitamin D, you're going to respond to COVID and MS better.
Interesting. So I mentioned at the outset, we do take questions on Facebook. But we also take questions on YouTube, and so I want to get to one of those. It's one of the first ones we've had on YouTube, since we just started up simulcasting on YouTube. And this is from thefaraway who asks, what are possible factors that are thought to contribute to MS? And does it run in families? Which is something that I'm sure many people with MS would be very interested in knowing. An I don't know, would Dr. Javed maybe take this one?
Yes, sure. So the question is, what factors other than multiple sclerosis run in the family, if I understand that correctly?
So you know, most patients, we often find that there is in the family, or even in the patient, some signs of other autoimmunity. For example, our other colleague, Dr. Cipriani was looking at the relationship between MS and having lupus, or other cousins of lupus, in the family or in the patient. Migraines tend to run in the family, or even in the patient. So depression and anxiety, those are the things that we often see in the family or in the patient.
So there is evidence of other autoimmunity, depression, and migraines. Those are the factors that we see sometimes as the comorbid conditions.
So can I follow up on that too?
First of all, it is a hereditary disease, but it's not like blue eyes and brown eyes. It's not 50-50 autosomal dominant. Your chance of getting MS is one in 1,000 in Chicago. But if you have somebody in the family, it goes up to 1 in 100 or maybe 1 in 50. It's still rare. But the things I mentioned about smoking and vitamin D are important for anybody with MS in the family. Everybody else shouldn't do those things either.
And secondly, the modest Dr. Javed did not mention his very important finding when he was a fellow here, that there is an overlap syndrome that looks like MS that's related to lupus, systemic lupus erythematosus, that is not MS. And usually lupus is not associated with MS, but with this other disease called neuromyelitis optica, which affects the spinal cord and the eyes, and it's related to lupus, it's devastating. And some of the MS treatments, such as interferons, actually make it worse.
And so that's why it's so important to have the right diagnosis, so you can tell people what will happen in the future and pick the right drug for them. With this very rare condition that most people have never seen and most have never heard of it, Dr. Javed takes care of 100 people with this rare disorder. And so he has more patients with NMO than anybody else I know of in the country.
You said you were going to brag on Dr. Javed a little bit before the program, and you did. So I'm glad you did. So you mentioned vitamin D a couple of times. If somebody just thinks, I'm going to start taking vitamin D, do you have any recommendations as far as levels and amounts? Or should they see their physician first?
Yeah. It helps to know what your level is. And if it's low, the typical dose is about 4,000 units in the winter, especially, maybe 2000 in the summer. If your levels are high, you can tell that from this blood test, there may be no reason to do it. So that's where the medical input is helpful.
Perfect. So Dr. Javed, Caitlin asked, do you think there's any validity to inflammatory type diets and disease progression?
Yes. I'm glad someone asked that question. Absolutely. I mean, there are-- not just multiple sclerosis. There's the other autoimmune diseases, lupus Crohn's, and also colitis. There is this whole idea about the gut microbiome, which actually contributes to inflammation in the body. So if you have a healthy gut microbiome, there is less of inflammatory milieu or environment in the body.
So we do advise patients to eat a very healthy diet, yogurts or other probiotics are both helpful. So gut health is actually very important. So Dr. Reder mentioned vitamin D. He done extensive research, looking at the genetics also involved in vitamin D responses. So yes, a healthy diet, exercise, abdominal obesity, and a good, healthy gut microbiome are very essential.
We're about out of time, but there's a couple of things that I think are really important that we get to before we wrap the program. The first one would be clinical trials. And Dr. Reder, I don't know if you want to talk to us a little bit about clinical trials and some of the things that happen here at UChicago Medicine in that realm. How important is that for MS patients?
Oh, yes. It's critical. Because we've been talking about clinical symptoms in MS and how to diagnose it, and that's critically important to get things right. And the next step is, on the other end of it, is basic research. And we've found that there are 8,000 genes that are abnormal, abnormally regulated in MS. It's not the DNA. It's how they're being used by the body.
So in between this basic research and the clinical picture is what we can do to push the field forward and find new treatments for MS. And I was involved here in the very first drug that was approved by the FDA to treat MS approved in 1993. Before that, there was no treatment for multiple sclerosis. It changed the course of the disease. And that was when interferon, which we've mentioned in the COVID aspect, that was approved in 1993. Since then, we have 18 drugs, and we've done about 80 different trials here. And developed many of the current therapies for MS. And right now, we're expanding the portfolio, looking for new drugs for repair.
And one of the studies we're doing right now is trying to find out whether Blacks and Hispanics respond to the MS drugs the same way white people do. Because we think there may be some genetic and medical differences between all of these groups. And we want to target therapies so people do the best on a given therapy based on certain markers that we're trying to develop too. So this is all integrated from talking to people, understanding MS, to developing new drugs to treat the disease even better than we have now.
And I think that is critical. And it's one thing I like to stress during these programs, that we are an academic Medical Center, we're a research institution. And when you combine all of that and just the ability for our physicians and scientists to literally walk from one building to another to talk to each other, it has a huge impact on the patient, and certainly a very positive impact. We're out of time, but Dr. Javed, I'm going to let you close us out and tell us a little bit about the MS clinic, and what patients can expect when they come to UChicago Medicine's MS clinic.
So we have a very comprehensive clinic. And I think one of the greatest aspects of coming to University of Chicago is this research experience. We love to study patients clinically, and then we have a research background like Dr. Reder mentioned, both in the basic science to translational. You know, I'm working MRI techniques, Dr. Reder's working on some immune cell research and responses in different [SOUND OUT]
He seems to have faded.
I think we're losing some audio. Yeah. Dr. Reder, can you jump in and finish this up? I'm sorry, Dr. Javed.
And so, yeah, we're working on all aspects of multiple sclerosis. And then, as for the clinic, we're tightly linked to urology and psychiatry and social work and we've got certified MS nurses who are very expert in treating MS and getting through mountains of paperwork that we don't want to talk about. But it's important in the medical environment. And so this is a comprehensive MS center, designated so by the National MS Society. And we provide pretty much everything possible to MS patients.
Fantastic. Dr. Reder, or Dr. Javed, thank you so much for being on the program today. And thank you to our viewers for just really, really great questions and back and forth. Please remember to check out our Facebook page for our schedule of programs coming up in the future.
Also, if you want more information about UChicago Medicine, take a look at our website at uchicagomedicine.org. If you need an appointment, give us a call at 888-824-0200. And remember, you can schedule your video visit by going to the website. Thanks again for being with us today. And I hope everyone has a great week.
Multiple sclerosis is a chronic autoimmune disease of the brain and spinal cord. While the exact cause is not known, we do know that MS causes a person's immune system to damage the protective covering of nerves. This leads to interruptions of nerve impulses that travel to and from the brain and spinal cord.
Adil Javed, MD, PhD
Adil Javed, MD, PhD, has expertise in autoimmune diseases of the brain and spine, including multiple sclerosis, lupus, Sjögren's disease, and other related connective tissue diseases.Learn more about Dr. Javed
Anthony T. Reder, MD
Anthony T. Reder, MD, is an expert on multiple sclerosis (MS) and an instrumental faculty member in the University of Chicago Medicine's large MS program.Learn more about Dr. Reder