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RealTalk MS
Episode 456:The First 100 Days Following Your MS Diagnosis with Dr. Nancy Sicotte
00:30:09
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I'm john strum, and this is real talk, mississippi. It's May 26th and we have a lot to talk about. May 30th is World Ms. Day, and at Real Talk Ms. We're calling this World Ms. Week. This year, the theme of World Ms. Day is My Ms. Diagnosis. And the subject of getting that Ms. Diagnosis continues to be the focus of researchers and clinicians everywhere. In many parts of the world, including many parts of the United States. Being diagnosed with Ms. Still takes far too long. But the criteria that neurologists depend upon to diagnose Ms. Continue to evolve, promising shorter times to diagnosis along with more accurate diagnosis. Everyone has a story about their journey to their Ms. Diagnosis. I've heard some stories that are short and sweet and others that reflect the frustration that comes from waiting months or even years to finally get a definitive diagnosis. In celebration of World Ms. Day, there's a pretty clever and fun way for you to share the story of your Ms. Diagnosis journey. I hope you'll visit worldmsday.org/ poster maker where you can create your own poster reflecting your Ms. Diagnosis journey. That's worldmsday.org poster-maker and you'll find that link in today's show Notes. I hope you find time to check it out. It's a great way to share your diagnosis story with the global Ms. Community. I've been thinking about what happens right after that diagnosis after an individual hears you have Ms. This week, Dr. Nancy Saicott joins me to discuss some of the things you should know, some of the things you should be thinking about, and some of
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the things you should be doing during
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the first 100 days following an Ms. Diagnosis. Dr. Saikat is the Chair of Neurology and Director of Multiple Sclerosis and Neuroimmunology at Cedars Sinai in Los Angeles, and she's the past chair of the National Ms. Society's National Medical Advisory Committee. But before we get to my conversation with Dr. Nancy Saicott, there are a few other things that you should know about. If you're a regular listener, you don't need to be reminded that evidence shows that exercise is beneficial for people living with Ms. At every level of ability. Well now, researchers from Harvard's Mass. General Brigham Neuroscience Institute and the University Medical Center Hamburg Eppendorf have published study results that show that irisin, a hormone that's produced by our muscles during exercise, can protect neurons from inflammation driven neurodegeneration. In previous research, this team found that irisin can improve cognitive function and reduce neuroinflammation in mouse models of Alzheimer's disease this latest study using a mouse model of Ms. Revealed Irisin's neuroprotective effects. In this study, the researchers found that Irisin reduced both clinical symptoms and the loss of neurons in mice with the mouse version of ms, and when Irisin was removed, those protective effects of exercise disappeared. The research team pointed out that the benefits of exercise in multiple sclerosis are complex and likely involve multiple factors, not just Irisin alone, and they've called for additional research to understand how irisin's neuroprotective mechanism works. Now, this is where I remind you that while this is encouraging news that could open the door to a new target for Ms. Therapies, there's still a huge difference between a mouse brain and a human brain. So we'll keep an eye on Irisin and see what future research reveals. In the meantime, if you'd like to review the details of this study, you'll find a link in today's show. Notes Biotech company Tiziana Life Sciences has reported that their experimental nasal spray for alumab continues to provide evidence that it may help slow disability progression and ease fatigue in people with non active secondary progressive Ms. Now, just to clarify this jargon around non active and active secondary progressive ms, secondary progressive Ms. Is defined by slow, steady disability worsening over time without relapses or new disease activity on mri. But there are some people living with secondary progressive Ms. Who continue to experience occasional relapses or show signs of disease activity on their MRI scans. This is what's known as active secondary progressive Ms. And treatments used for relapsing remitting Ms. Have been shown to be generally effective for active secondary progressive Ms. In non active secondary progressive ms, an individual isn't experiencing relapses and they don't have new inflammation on mri. And because there aren't signs of active inflammation, the standard anti inflammatory disease modifying therapies aren't generally effective for people with non active secondary progressive Ms. So 14 people with non active secondary progressive Ms. Have been using for alumab as part of an expanded access program. Now, an expanded access program is an FDA program that allows patients with serious or life threatening conditions to access investigational drugs or medical devices for treatment outside of clinical trials when there is no satisfactory alternative therapy available. After three years of follow up, only one of the 14 people using foralumab has experienced disability worsening. And in addition to delaying disability progression, nine of the 14 patients showed clinically meaningful improvement in fatigue while only two of the 14 experienced clinically meaningful worsening. Tiziana Life Sciences is currently conducting a phase 2a clinical trial testing for alumab among 14 adults with secondary progressive Ms. Who have experienced disability worsening despite at least two years of treatment with other disease modifying therapies. If you'd like to learn more about that clinical trial, including contact information and locations for the trial, you'll find that link in today's show. Notes I remember when my wife was diagnosed, someone said, this is a good time to be diagnosed with Ms. I understood their sentiment, but I didn't believe that then and I don't believe it now. It's never a good time to be diagnosed with Ms. However, I'll say that with the therapies available today, Ms. Has never been more manageable. Many people living with Ms. Are leading full lives today without experiencing relapses and with their disease well managed at the time you're diagnosed, your mind races in a hundred different directions at once, and between social media posts and some of the things your imagination conjures up, it's easy to take a turn down the wrong path and find yourself in a pretty D workplace this year, the theme of World Ms. Day is my diagnosis, and Dr. Nancy Saicott is joining me to discuss the things you should know, the things you should be thinking about, and the things you should be doing in the first 100 days following an Ms. Diagnosis. In a moment, we'll meet my guest, Dr. Nancy Sickot.
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World Ms. Day is May 30, and this year's theme is Diagnosis Navigating Ms.
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Together.
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If you've been living with Ms. For a while, you've probably found a way or ways to navigate Ms. But those initial days following an Ms. Diagnosis can often be a pretty bumpy ride. You're getting lots of new information, you're scanning social media to learn how other people are managing their Ms. You're probably coming up with dozens, if not hundreds, of questions you really want answers to while your imagination is working overtime, inventing scenarios of what your life is probably going to be like. Dr. Nancy Saicott is joining me today and we're discussing those first 100 days following an Ms. Diagnosis. Dr. Saicott is the Chair of Neurology and Director of Multiple Sclerosis and Neuroimmunology at Cedars Sinai in Los Angeles, and she's the past Chair of the National Ms. Society's National Medical Advisory Committee. Welcome back to the podcast, Dr. Saikat.
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Well, thank you, John. It's a pleasure to be here.
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As I mentioned A moment ago. This year, the theme of World Ms. Day is diagnosis Navigating Ms.
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Together.
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I'm wondering, how has the day one conversation changed for patients today compared to,
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say, a decade ago?
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Well, I'm happy to say that the conversation has a lot more reassurance and hope. And I would go back to the start of my career, which was more than 20 years ago now. So it is a different conversation than it used to be in the past. But regardless of that, it's still a very difficult time. Scary and very fraught and I think very important as we think about people starting their journey living with Ms. I think it's really important that we get it right at the beginning.
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You know, over the past year, we've heard quite a lot about the McDonald criteria. How are these updated guidelines for diagnosing Ms. Helping you and neurologists everywhere catch Ms. Earlier than before?
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So we've seen an evolution of the diagnostic criteria over the past several decades. And with each iteration, it gives us the tools so that we can make a diagnosis of Ms. Earlier in the course and sometimes now, even before anyone has experienced a symptom. And that is very exciting in the sense that we can in some ways prevent disability completely so we can stop Ms. In its tracks, really, before it even gets started. So the new criteria gives us new tools. So not just relying on clinical presentation, which is the, you know, in the past, the cornerstone of how we would make a diagnosis. Now we can use all sorts of additional tests, in particular MRIs and new MRI techniques that have been developed that are much more specific and sensitive to changes that are related to multiple sclerosis. And I'm referring to our famous paramagnetic rim lesions and central vein sign. And we've been very involved in this work at Cedars. In particular, Pascal Satie has dedicated the last decade to these biomarkers. But it's very exciting and important because the truth is, sometimes people are misdiagnosed as having Ms. When they don't have it. So I can't imagine a worse way to start those hundred days and think that you're living with Ms. When it turns out you're actually not. And that can be really an emotionally fraught journey to undiagnose someone. And the reason why people would get misdiagnosed is mainly because of these MRI changes that were non specific in the setting of some non specific symptoms. So with these new criteria, we can go in and look at those lesions and be much more confident if we see something that's abnormal there, that it's related to a Ms. Change, not something else like migraine or hypertension.
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Beyond mri, which is so much the focus of the diagnostic criteria, how close are we to using a simple blood test as a standard part of the initial diagnostic toolkit?
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So the blood biomarkers are evolving rapidly and are going to be very much involved in an important part of our armamentarium as we're making diagnosis, but also as we're thinking about treatment response and prognosis. So I think we're very close to incorporating kind of a baseline measure of these markers as a patient is being diagnosed and then following those levels of things like neurofilament, light chain or GFAP to see if the therapies that have been started are working as they should be and decreasing those signs of inflammation.
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There's certainly evidence that early intervention with disease modifying therapy can make a significant difference in a patient's long term quality of life. In addition to medications, and I want to stress in addition to, and not instead of in addition to medications, what role can lifestyle interventions like diet and exercise play in managing Ms. And creating better patient outcomes?
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Well, I'm really glad, John, that you brought that up because I think this is one of those really important pillars of those first hundred days is really empowering patients to give them things that they can do in a positive way to impact the way they're feeling and in the long term for their ultimate outcomes. So we know that it's the usual suspects that really need to be focused on like exercise, restorative sleep, eating a healthy diet, socializing, managing stress. And you know, in some ways, for folks who get diagnosed with Ms. In their 20s and 30s, they have a leg up on other people who don't really start thinking about these healthy lifestyle changes until they're in their 40s and 50s. And what I've seen, which has been very encouraging, you know, living in Southern California, people are very health conscious, but I have large patient population in their 60s and 70s and I'm telling you, they just, they look great, they exercise, their weight is under control, you know, if they're lucky enough to not have diabetes. And, and they really are doing so well. And these are folks who've been living with ms, as I said, for decades. So this kind of lifestyle change can really give patients something that they can anchor on and something they can do. So not feeling powerless. And it's really important because it does make a difference in the long term.
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What's the most important metric? And I'll put air quotes around that Word metric. What's the most important metric a patient should watch in the first year following their diagnosis?
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Well, I always tell patients first and foremost, just take a deep breath and let yourself have time to come to grips with the diagnosis. And I always tell them to wait a year before they think they really have it under control or understand what they're dealing with. It just takes time. So I would say the most important metric is to be patient with yourself and to give yourself time and space to process this new reality and this new life that you'll be living. And I always have found a year later, it's much, much better. People feel totally different than they did. And I usually have a conversation about that. Remember when you were diagnosed and how you felt and how you feel now? Always, almost always it's like, oh my gosh, I wish I knew then what I know now. And you know, feeling so much better. So give yourself, give yourself some, some space and time.
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My own experience has taught me that Ms. Doesn't only impact the individual with the diagnosis, it impacts families. And I'm wondering, what's the one thing the spouse or partner of a newly diagnosed person, what do they need to know in these first hundred days of following diagnosis?
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It's a great question. I always recommend that patients and people normally do this, bring someone with them to their visits. So they need someone whose cortisol levels are not through the roof to be listening and taking notes and hearing what's being said so they can reflect it back. So I think people who live with, people who live with Ms. Are so important for the long term outcome of patients. And so just being there, being a sounding board, recognizing that your partner is going to be struggling and gonna have, you know, ups and downs. You are making me think about just last week, one of our lovely patients that we take care of here, Laura Locke and I, my nurse practitioner, we went over to the hospital because wife had just delivered their first child. And that was so joyful. He was so excited and you know, seeing that family unit that is growing together and you know, he had questions and fears about fatherhood with the diagnosis. But you know, his partner is super supportive and you could just see how this little family unit was going to be supporting him and on his journey and it was, it was lovely.
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I want to talk about kids for a minute because they often get left out of conversations about Ms. But children and teens are also being diagnosed with Ms. How does the first hundred days differ when the patient is 10 years old versus 40?
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Oh, that's a It's a really good question. I have to say. I don't take care of that many 10 year olds, but I certainly have diagnosed and taken care of people in their teens when they're, when they've been diagnosed with Ms. It is a very different kind of environment, in part because of course, the children are not fully developed. They don't have all of the capacity to really understand the impact of what's happening or the diagnosis. And I have found, especially in the adolescent years, they really need a lot of support and information because this is the time of rebellion. Certainly have seen kids or young people with Ms. Stop using their disease modifying therapies or make a decision that they're not going to follow up with their neurologist. And I certainly understand this is a time when you want to be out with your friends and you don't want to be different. So I think we need to be very sensitive to that and I think we have to be aware of the pitfalls around that time because we really don't want, we want to set folks up for success for the long term and that's consistent treatment even during the adolescent times.
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In treating adults with ms, the patient is the primary decision maker. But in pediatric Ms.
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It can be a little different.
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So when it comes to shared decision making, how do you empower that teenage patient while also supporting their parents? Anxieties?
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Yeah, that's a great question. I think you absolutely have to get buy in from the patient and obviously the support from the parent. But one thing that is not gonna work is if you have a top down kind of, this is what you will do. Because it definitely requires a patient living with Ms. To be on board with the treatment. So I think there has to be a respectful dialogue and sharing of information and then ultimately shared decision making and recognizing that younger people have a different way of looking at the world and looking at themselves in life and feeling invincible. I think we have to try and address that and really give them, you know, the information so that they can make the best decisions.
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Managing Ms. Really requires a team approach, a comprehensive approach. Besides a neurologist who should be in a patient's starting lineup.
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Yes, great question. Well, besides family members, supportive family members who are gonna, you know, be there to make sure they're doing their medications properly and getting to the doctor and so on. Very frequently we will engage a whole team of folks to help people, including physical therapy, depending on what the issues are, or occupational therapy. So getting a good exercise and rehabilitation plan in place can be very helpful for for recovery, but also empowerment. We very often are calling on our urology colleagues to help manage bladder symptoms. And then I would also add that it's very important for people who live with Ms. To have a primary care physician because there are health related needs that should be addressed, including the regular suite of vaccinations that we, that we recommend and health maintenance things. And you know, depending on which disease modifying therapies, there may be other, for example, cancer screenings that would be more important, like seeing a dermatologist, making sure you're getting your mammograms and colonoscopies. And so really it's a whole team and the neurologist could be the quarterback in some cases. But you know, I definitely want my patients to have a primary care doctor that I can work with to make sure all of those other facets are taken care of.
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The Internet can be a scary place for someone who's been newly diagnosed. Scanning social media posts, it's easy to find more misinformation than useful information. And even when you find accurate information, as you know, because of the nature of multiple sclerosis, how it affects different people so differently, one person's experience may have nothing to do with another person's. So I'm wondering, what are some of the online resources you point your patients toward?
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Well, first I tell them not to go google once they've gotten their diagnosis, but you know, usually it's too late, they've already googled it and people say that they put in other symptoms. These are patients who don't have ms, and it comes out with a, you may have Ms. So I don't know what the algorithms are, but they're really over diagnosing. So I do tell people, don't go down the rabbit hole, please, please don't do it. And then I always steer them to the national Ms. Society website because that is a font of information. It has the Ms. Navigator information available there so you can set up a time and talk to somebody who is very informed about everything related to living with Ms. And has region specific information to provide for patients when they're looking for help. And it also provides enormous amounts of information about the disease, modifying therapies and symptomatic therapies. And I like to tell them that this is done without all of the hype. There's no marketing, so it's not sunshine and butterflies and oh, you take this medication and you'll be skipping through the meadow. It's just the facts. And they're presented in a way that patients can absorb it. Usually my go to. And then I do encourage patients to get involved with their local chapter of the National Ms. Society and their support groups. That is very variable in terms of uptake, but definitely have patients who found community among other people who are living with Ms. And we have a very active young adult group here, young professionals group, and they really support each other. And I think that's another thing that's so important for people who live with Ms. Is finding their community.
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If there's one common myth about an Ms. Diagnosis that you could lay to rest
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today, what would it be?
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So usually, well, I guess I would say two myths. One is that you're inevitably going to end up in a wheelchair, which is absolutely false. And that has, you know, especially the case. It was the case but back in the day, but especially the case now with effective therapies and for women, and even men who live with ms, but in particular women, this idea that if you have Ms. That you can't have a family. And I think that message has gotten through. We manage so many women who have successful pregnancies now. It's such a joy to me that because it's so different than when I first started my career. And I've said this before, but usually the first time I meet a patient, it's a woman of childbearing age. I say, I'm going to be just like your mom and ask you when are you going to get pregnant? But that helps us work through their disease modifying choices and we just plan for that from the beginning. So, you know, people these days who get diagnosed can really look forward to almost always to live a full, rich life and do all the things that they want to do that they dreamt of doing before they had the diagnosis. So that's the message that we want to get through to folks.
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Well, thank you for sharing that message. My listeners have now heard part of that message more than once, very recently.
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Just a couple of weeks ago, Dr.
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Riley Bovet was a guest on the podcast and we were talking all about pregnancy and Ms. And I remember asking her when should a patient informed their neurologist that they're thinking about family planning? And she said, oh, it should be a conversation at diagnosis and it should be the neurologist asking. So she's gotten your message too.
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Well, I do want to give a shout out to Dr. Bove because she has moved the field forward in so many positive ways in our understanding and demonstrating the safety of the disease modifying therapies both before pregnancy and after, during nursing in recent really help to answer these lingering questions that we had so that we can give our patients definitive information and reassure them that they can be treated before they get pregnant and then after and you know, even in some cases during, although thankfully that's not always, not very commonly needed. But this has been tremendous and I'm very appreciative of her and her colleagues for the work that they've done.
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Well, Dr. Nancy Saicat, I want to thank you for all you do to improve the lives of people living with Ms. And I want to thank you for talking with me today.
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Thank you, John, and right back at you. Thank you for everything you do. It's been a pleasure that's going to
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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@realtalkms.com 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. This week I'm attending the Consortium of Ms. Center's annual meeting in Charlotte, North Carolina. And in next week's episode, I'll be taking you inside this meeting where you'll meet some of the world class Ms. Experts who are here in Charlotte presenting their research. I hope you're planning to join me. I'm John Strum. Thanks for listening. Stay safe and make healthy choices.
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Sam.