#086: Navigating Menopause With MS – Key Insights On Symptom Progression, Aging, And Personalized Care (ECTRIMS Special) MS-Perspektive

40:19

Neuroradiologist Prof. Mike Wattjes explains in easy-to-understand terms what you need to know about MRI scans for MS. You can read through the transcript here: https://ms-perspektive.com/110-10-mri-facts This time, I have translated the original German interview with Prof. Dr. Mike P. Wattjes on the importance of MRI as an imaging technique for diagnosis, progression assessment, therapy decisions, and monitoring of disease-modifying therapies in MS patients into English. Prof. Wattjes is the lead author of the MAGNIMS Guideline 2021, which provides global recommendations and standards for MRI examinations in people with MS. He explains the ten most important things about MRI in multiple sclerosis in an easy-to-understand way. He also discusses well-established MRI imaging options that will hopefully soon be available to all MS patients and the importance of standardization in order to harness the potential of magnetic resonance imaging. Table of Contents Introduction Prof. Dr. Mike P. Wattjes Magnetic resonance imaging (MRI) in multiple sclerosis Farewell See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.…

MS-Perspektive - The Multiple Sclerosis Podcast

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#109: Understanding Cognitive Reserve and Its Role in Multiple Sclerosis 16:34

hace 12 días16:34

16:34

Cognitive reserve is important for PwMS as it can compensate damage caused by MS to a certain amount. Learn how to measure and improve it. You can read through the complete article on my blog: https://ms-perspektive.com/109-cognitive-reserve I often talk about the cognitive reserve in my podcast and blog posts. When it is used up, the brain can no longer compensate for any damage that occurs. However, it is more of a concept and not that easy to grasp, this cognitive reserve, and of course it can also be used up in other ways. So it’s time to take a closer look at it. How can you measure it and what do you do with the result? Fortunately, there are a number of training options to counteract the invisible challenges – such as memory lapses, concentration difficulties or slowed thinking. To ensure that cognitive changes do not have a significant impact, it is crucial that our brain has the ability to adapt, remain flexible and continue to function even in the event of damage or disease. The good news? Cognitive reserve is not set at birth. You can actively build and strengthen it over time, even into old age. Find out what the concept of cognitive reserve really means, how it is measured using the Cognitive Reserve Index Questionnaire (CRIq), and, most importantly, what you can do to protect and boost your brainpower – even if you are struggling with MS-related fatigue or limited time. Whether you are just starting to explore the topic or are looking for new strategies, this guide is designed to help you take a confident step towards mental resilience. Table of Contents What Is Cognitive Reserve and Why Is It Important in MS? What Is the CRIq and How Does It Measure Cognitive Reserve? What Can You Do If Your Cognitive Reserve Is Low? Why Aren’t These Tests Commonly Used in MS Care? How Reliable Is a Self-Test and What Are Its Limitations? Why Is It Always Worthwhile to Train Cognitive Reserve? How Can You Train Cognitive Reserve Effectively? Do I Need to Train All Areas? Why You Shouldn’t Be Disheartened by a Low Starting Score How to Start Small (Especially with Fatigue or Limited Time) In Summary More information You can also complete the CRIq conveniently online through the official platform: https://www.cognitivereserveindex.org/choice.php . This allows you to choose between a long or short version, both designed for easy self-assessment. I’ve done it myself and provided my anonymous information to the University of Padua, Italy. It is quite basic, but gives you an idea where you stand. More information If you want to know more about the cognitive reserve, you might want to start with the Wikipedia article which offers further resources as always. --- See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.…

MS-Perspektive - The Multiple Sclerosis Podcast

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#108: How you can use ChatGPT (or another AI) to prepare for the doctor’s consultation 13:24

hace 19 días13:24

13:24

Find out how AI can help you to get a more structured doctor's appointment that allows you to address all important points. You can read through the article or copy the prompts and replacing the details with your symptoms and request: https://ms-perspektive.com/108-chatgpt Today, I’ll show you how you can use AI, for example ChatGPT, to better prepare for your doctor’s appointment. I visit the MS Center in Dresden, Germany, once every quarter, and in all these years, it has happened often enough that I forgot to address important topics. There were different reasons for this. You probably know the feeling. When results are presented that you didn’t expect, terms are used that are new or at least not familiar enough to make you wonder. And with a chronic illness like multiple sclerosis, there may well be several topics to discuss with your doctor. Time is usually short – and when you’re nervous, it’s easy to forget half of what you need to say. I have found that ChatGPT can help me prepare for such conversations. In this episode, I’ll show you how it can work in practical terms, using a real-world example. Table of Contents Why is preparation so important? A practical example: MS and ChatGPT How do I set up a conversation like this? Conclusion and invitation Protect your private data Protect your private data Please remember not to upload any personal data that could be used to identify you, such as your doctor’s note with your address. Instead, upload only the section that does not include your name. Or black out all sensitive data beforehand. --- See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.…

MS-Perspektive - The Multiple Sclerosis Podcast

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#107: LGBTQ+ and MS: The Fight for Inclusive and Equitable Care with Dr. William Conte 45:57

hace 26 días45:57

45:57

Dr. William Conte talks about the challenges and opportunities for LGBTQ+ people with MS – and how inclusive, empathetic care can succeed. You can find the transcript on my blog: https://ms-perspektive.com/107-lgbtq How do LGBTQ+ people with multiple sclerosis experience the healthcare system – and where do they encounter hurdles that often remain invisible? In this special episode, I talk to Dr. William Conte, a neuroimmunologist and member of the LGBTQ+ community himself, about a lack of representation, medical trust, mental health and the importance of affirmative, inclusive care. Dr. Conte brings not only professional expertise but also personal perspective – and is passionate about ensuring that queer people with MS are finally seen, heard and receive better medical care. A conversation about courage, change and why “keeping an open mind” is sometimes the most important first step. Table of Contents Introduction & Personal Perspective Health Disparities & Barriers to Care The Role of Inclusive & Culturally Competent Care Community, Advocacy & Research Quickfire Q&A Session Farewell Introduction & Personal Perspective Can you share a bit about your journey as a neurologist specializing in MS and your experience as a member of the LGBTQ+ community? My journey into neurology began during my undergraduate years. I started neuroscience research by chance and quickly developed a passion for it. That led me to medical school, then a residency in neurology, and ultimately to a subspecialization in neuroimmunology. During my residency, I was drawn to MS because of the patients and the rapid advancements in therapies at the time. Being a gay man myself, I recognized a lack of representation and research in LGBTQ+ MS patients and felt compelled to become an advocate for this community. What is your message to healthcare professionals who want to improve care for LGBTQ+ MS patients? Be curious. You don’t need to have all the answers or hang rainbow flags everywhere. Just take the time to learn. Whether it’s attending a session on LGBTQ+ health or simply asking thoughtful, respectful questions, it shows patients that they’re in the right place. Where can listeners find you or learn more about your work? I’m very Googleable! You can find me through my clinic’s website or on LinkedIn. I regularly publish and speak on these topics, and I’m always happy to connect. --- See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.…

MS-Perspektive - The Multiple Sclerosis Podcast

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#106: Trigeminal neuralgia and MS – an invisible challenge. Interview with Dr. Monika Köchling 19:35

hace 5 weeks19:35

19:35

MS patients can also suffer from trigeminal neuralgia, which is very painful. Dr. Köchling explains the treatment. Translated interview. You can read the full article including the treatment details on my blog: https://ms-perspektive.com/106-trigeminal-neuralgia This time, I've translated the German interview with Dr. Monika Köchling about the causes and treatment options for trigeminal neuralgia. Since this form of facial pain can lead to extreme restrictions in the quality of life, it is extremely important to treat it. The good news is that there are many approaches to controlling the pain or even getting rid of it completely. However, this can sometimes take a little longer and it is important to work with your doctors to find a solution and possibly try several approaches. The original interview was in German and I adapted it for the international MS community. Table of Contents Introduction Monika Köchling Basics of trigeminal neuralgia in MS Treatment options for trigeminal neuralgia in MS Effects of trigeminal neuralgia in MS Quickfire Q&A Farewell Introduction Monika Köchling I work in Grevenbroich, Germany, as a neurologist, psychiatrist and psychotherapist in a large group practice, the NeuroCentrum am Rheinlandklinikum. I live in Düsseldorf and am married for the second time. I also have two grown-up sons. My hobbies include singing in a choir, hiking and poetry. Finally, what is the most important message you would like to give to MS patients with trigeminal neuralgia? Attitude is crucial. Don’t despair. Become and remain resilient and dare to try new things. To quote Hilde Domin: “I put my foot in the air and it carried me.” --- Many thanks to Dr. Köchling for the in-depth insight into the treatment options for trigeminal neuralgia. See you soon and make the most of your life, Nele You can find more information and positive thoughts in my free newsletter. Here you will find an overview of all previous podcast episodes.…

MS-Perspektive - The Multiple Sclerosis Podcast

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#105: The Sumaira Foundation & NMO: How One Woman’s Journey is Changing Lives Worldwide 40:17

hace 6 weeks40:17

40:17

Sumaira Ahmed turned her NMOSD diagnosis into a global movement, founding The Sumaira Foundation to support patients and drive research. You can read through all questions and answers on my blog: https://ms-perspektive.com/105-tsf Neuromyelitis Optica Spectrum Disorder (NMOSD) is a rare autoimmune disease that can feel isolating and overwhelming. But for Sumaira Ahmed, her diagnosis became the spark that ignited a global movement. In this episode, we dive into her personal journey with NMO, the challenges she faced, and the resilience that led her to create The Sumaira Foundation (TSF)—an organization dedicated to raising awareness, supporting patients, and funding research for NMOSD and MOGAD. Sumaira shares raw insights into her diagnosis, the treatment landscape then vs. now, and how finding community changed everything. We also discuss the power of advocacy, the impact of TSF Ambassadors worldwide, and the exciting developments shaping the future of NMOSD care. Whether you’re a patient, caregiver, or simply interested in how one person can make a global difference, this conversation is filled with hope, inspiration, and practical insights. Table of Contents Introduction – Who is Sumaira Ahmed? Personal Journey with NMO Facing Challenges & Finding Strength The Sumaira Foundation (TSF) A Message for Other Patients Quickfire Q&A Session Farewell Introduction – Who is Sumaira Ahmed? Hi, everyone. My name is Sumaira Ahmed, and I’m a patient living with seronegative Neuromyelitis Optica Spectrum Disorder (NMOSD). I live in Boston, Massachusetts and was diagnosed 11 years ago after sudden vision loss and weakness. Six weeks after my symptoms started, I received my diagnosis. Just two months later, I founded The Sumaira Foundation, which is now 11 years old. I currently serve as the Executive Director. Finally, what advice would you give to someone who has just been diagnosed with NMO or another rare disease? Feel what you’re feeling—it’s okay to be sad, angry, or scared. Those emotions are valid, but don’t let yourself get stuck in them. There will be light at the end of the tunnel, even if it takes longer than expected. Believe in yourself. Our minds and bodies are capable of so much more than we think. If I had given up when I was told I had only a short time left, none of this would have happened. Don’t give up! How and where can interested people find you online? You can visit The Sumaira Foundation at www.sumairafoundation.org . The website is available in 25 languages so that people from around the world can access information in their native language. We are active on social media, and you can follow us on: Instagram , Facebook , LinkedIn , X (Twitter) , Blue Sky , TikTok , and YouTube On YouTube, we have hundreds of educational and empowerment videos for patients and caregivers. --- Nele von Horsten: That’s fantastic! Sumaira, thank you so much for your time and for sharing your incredible journey. I know I missed you at ECTRIMS in Milan, but I’m sure we’ll meet at another event soon! Sumaira Ahmed: Absolutely, Nele! I appreciate this opportunity, and I look forward to seeing you at a future event. See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.…

MS-Perspektive - The Multiple Sclerosis Podcast

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#104: Leveraging AI in MS Care and Shared Decision-Making with Dr. Stefan Ebener 50:05

hace 7 weeks50:05

50:05

AI is transforming Multiple Sclerosis (MS) care by enhancing Shared Decision-Making (SDM), improving diagnosis, personalizing treatments, and empowering patients—discover the future of AI in MS with Dr. Stefan Ebener. You can read the short version of the interview on my blog: https://ms-perspektive.com/104-ai-in-ms-care Artificial intelligence (AI) is reshaping the management of multiple sclerosis (MS), particularly in shared decision-making (SDM) between patients and healthcare professionals. From early diagnosis and personalized treatment recommendations to improving doctor-patient communication, AI-driven tools are enhancing how MS is understood and treated. In this interview, I speak with Dr. Stefan Ebener, an AI healthcare expert at Google, about the current and future role of AI in MS care. How can AI simplify complex medical data? What are its limitations? And how can it support MS patients in making informed treatment choices? Together, we explore the transformative potential of AI in MS care and the importance of balancing technological advancements with human expertise. Table of Contents Introduction – Who is Dr. Stefan Ebener? Understanding AI in Healthcare Shared Decision-Making with AI Improving Contact with Healthcare Providers Ensuring Privacy and Data Security Accessibility and Inclusivity Potential Challenges and Limitations Empowering Patients through AI Introduction – Who is Dr. Stefan Ebener? Dr. Stefan Ebener: My name is Dr. Stefan Ebener, and I lead an international team of experts at Google. Our goal is to help customers implement cutting-edge technologies for real-world applications, including AI solutions in healthcare. What advice would you give MS patients who are curious about using AI tools to manage their condition? Dr. Stefan Ebener: Be curious, but stay cautious. AI can be an excellent support tool, but always verify information and consult healthcare professionals before making medical decisions. Nele von Horsten: Stefan, thank you for your insights! AI has incredible potential, but as you’ve mentioned, it must be used wisely. Dr. Stefan Ebener: Thank you, Nele! It was a pleasure discussing AI’s role in MS care. Looking forward to seeing how AI continues to evolve in this space. --- See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.…

MS-Perspektive - The Multiple Sclerosis Podcast

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#103: Can epigenetic research transform MS treatment? Insights into DNA methylation and MS progression with Dr. Majid Pahlevan Kakhki 42:26

hace 8 weeks42:26

42:26

Discover how epigenetic research is transforming multiple sclerosis treatment by uncovering the role of DNA methylation, gene regulation, and potential new therapies for MS progression. You can read through all questions and answers on my blog: https://ms-perspektive.com/103-majid Have you ever wondered how epigenetic mechanisms influence multiple sclerosis (MS) progression and why some people experience rapid disease worsening while others have a milder course? Could there be hidden biological switches beyond genetics affecting MS? In this deep dive, I explore the fascinating world of epigenetics with Dr. Majid Pahlevan Kakhki, uncovering how factors like DNA methylation shape MS progression and treatment outcomes. Join me as we discuss groundbreaking research on how lifestyle, environment, and molecular modifications influence MS. Could epigenetic therapies hold the key to slowing or even reversing disease progression? Read on to find out how this cutting-edge science is paving the way for more personalized and effective MS treatments. Table of Contents Introduction – Who is Dr. Majid Pahlevan Kakhki? Introduction to Epigenetics and MS Genetic Factors and MS Progression Clinical Implications for MS Patients Epigenetic Therapies and Future Prospects Broader Impact of Epigenetic Research Quickfire Q&A Session Farewell Introduction – Who is Dr. Majid Pahlevan Kakhki? Sure! My name is Majid Pahlevan Kakhki, and I’m originally from Iran, specifically from the Khorasan province in the northeast of the country. My childhood was closely tied to agriculture, as I spent a lot of time working in the saffron fields alongside my parents. As I grew older, I wanted to support my education and gain independence, so I learned tailoring and became quite skilled at it. This allowed me to finance my studies while remaining self-sufficient. I pursued a Ph.D. in Molecular Genetics in Iran, and after completing my doctorate, I moved to Karolinska Institutet as a postdoctoral researcher. Since then, I have been working there, focusing on cutting-edge research in my field. Finally, what message of hope or encouragement would you like to share with the listeners? „Don’t give up. I know that some days can be tough, but please remember that researchers around the world, including myself, are working hard to find better treatments and solutions for you. I truly believe that one day, we will hear the news that MS is cured, and we’ll be able to focus our research on curing other diseases.“ How and where can interested people follow your research activities? I have a LinkedIn profile ( https://www.linkedin.com/in/majid-pahlevan-kakhki ) and also the Karolinska Institute ( https://ki.se/en/people/majid-pahlevan-kakhki ) webpage where our research is reported. --- Many thanks to Majid and his colleagues for all the valuable research they are doing and the insights provided into it today. See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.…

MS-Perspektive - The Multiple Sclerosis Podcast

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#102: MS and domestic violence and abuse (DVA). Raising awareness, offering support, creating change with Sue Britt 1:05:25

hace 9 weeks1:05:25

1:05:25

MS patients especially women are at higher risk of ewxperiencing domestic violence and abuse. Awareness is key followed to create change. You can read through the questions and answers on my blog: https://ms-perspektive.com/102-dva Domestic violence and abuse (DVA) is a silent crisis affecting millions worldwide – but what happens when a chronic illness like multiple sclerosis is part of the equation? Living with MS brings unique challenges, from mobility issues to cognitive changes that can make recognizing and escaping abusive situations even more difficult. Research on the intersection of MS and domestic violence is still in its infancy, but a team from the universities of Leeds and Nottingham is working to change that. In the interview, I talk to Sue Britt, a chartered midwife, lecturer, and researcher at the University of Nottingham who is part of the study team, about how healthcare professionals respond to domestic violence and abuse in people with MS. With her background as a midwife and strong commitment to patient care, Sue sheds light on why people with MS—especially women—may face a higher risk of abuse, the warning signs to watch for, and how healthcare professionals can provide better support. If you or a loved one has MS and is concerned about domestic violence, this article provides insight, resources, and practical steps for seeking help. It is time to break the silence, raise awareness, and create meaningful change in the MS community. Sie sehen gerade einen Platzhalterinhalt von Podcast Player. Um auf den eigentlichen Inhalt zuzugreifen, klicken Sie auf den Button unten. Bitte beachten Sie, dass dabei Daten an Drittanbieter weitergegeben werden. Table of Contents Introduction – Who is Sue Britt? Understanding the Issue of Domestic Violence and Abuse (DVA) in MS The Connection Between MS and domestic violence and abuse Seeking Help and Support The Role of Research in Adressing domestic violence and abuse in MS Encouragement and Empowerment Quickfire Q&A Session Farewell Introduction – Who is Sue Britt? I am Sue. I’m actually a registered midwife by background and have a career in midwifery both as a clinical practitioner and a lecturer. Since 2022, I’ve been a full-time student at Nottingham University, where I’m exploring professional responses to domestic violence and abuse in people with MS. I’m married to Dave, we have three dogs Maxx, Jess and Pippa. Because I have three dogs, I enjoy walking and hiking, but I’m also very active in the gym. One fact about me that your listeners might find interesting is that my first degree was in German! I’ve also lived in Germany in the past and worked at the University of Erlangen as a Lektorin. Take care of yourself or your loved ones if you or they are affected by domestic violence or abuse. See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.…

MS-Perspektive - The Multiple Sclerosis Podcast

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#101: Shared Decision Making and AI: Making the best decisions for MS together with Dr. Sven Jungmann 47:25

hace 10 weeks47:25

47:25

How AI can improve shared decision making (SDM) for multiple sclerosis patients on their journey with Dr. Sven Jungmann. You can read the full interview on my blog: https://ms-perspektive.com/101-sdm-ai In today’s rapidly evolving healthcare landscape, the intersection of medicine and technology is transforming the way we approach patient care, treatment and long-term health management and artificial intelligence (AI) and shared decision making (SDM) is at the center of it all. Dr. Sven Jungmann, physician and entrepreneur combines two important areas of expertise. With his medical background and passion for tackling broader healthcare challenges, Dr. Jungmann has expanded his focus beyond the confines of hospitals and is committed to the power of digital solutions, artificial intelligence (AI) and automation in improving healthcare systems. In this interview, Dr. Jungmann discusses the critical role of AI and digital tools in the management of chronic conditions such as multiple sclerosis (MS) and provides insights into how technology can support both patients and healthcare providers. He also emphasizes the need for intelligent, ethically responsible healthcare solutions that free up doctors and nurses while improving the patient experience. Through his entrepreneurial activities, his writings and his research, Dr. Jungmann continues to advocate for change with the goal of creating more efficient, humane and patient-centered healthcare. Sie sehen gerade einen Platzhalterinhalt von Podcast Player. Um auf den eigentlichen Inhalt zuzugreifen, klicken Sie auf den Button unten. Bitte beachten Sie, dass dabei Daten an Drittanbieter weitergegeben werden. Table of Contents Introduction – Who is Dr. Sven Jungmann? Information on apps and digital solutions for people with MS General tips for evaluating and using digital health solutions Interaction of digital solutions and medical care AI and shared decision making Being an author Transforming power of AI Quickfire Q&A Session Farewell Introduction – Who is Dr. Sven Jungmann? It’s a pleasure to have the opportunity of making a small contribution here, Nele. Thank you so much. I’m a physician by training who realized early on that I wanted to tackle the bigger challenges in healthcare—beyond the walls of a single clinic or hospital. Don’t get me wrong: We absolutely need dedicated doctors and nurses who serve patients one-on-one. But I also believe we need people who can help multiply the impact of practitioners through technology, artificial intelligence (AI), and digital tools. Right now, too many healthcare systems are on the verge of financial collapse. We’re not training enough healthcare providers, and many of those who are trained end up frustrated by bureaucratic hurdles, way too many overhours, poor working conditions, and low payment (many people are still surprised when they find out how little many doctors actually earn). If we want sustainable, high-quality care, we need to embrace automation and digital solutions as much as possible in a smart, ethically responsible way. This includes everything from shared decision making to leveraging modern sensors and AI. Personally, I love working across different disciplines—whether with engineers, designers, psychologists, economists, or physicists. It stretches my thinking and brings such a diversity of perspectives. Being an entrepreneur compounds this thrill: practically everything becomes your playground, and while that can be intense (I’ll admit it’s hard to “switch off”), it’s also incredibly rewarding. How and where can interested people follow your research activities? I’d love for people to connect with me on LinkedIn , where I regularly share updates and insights. I’m also planning to get more active on YouTube with short talks and interviews about the intersection of healthcare, AI, and entrepreneurship. And my company’s new website will go live soon: www.aiomics.io --- I hope this interview has sparked your interest in trying out the new solutions available, while being aware of the possibilities and limitations of AI in shared decision making. See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.…

MS-Perspektive - The Multiple Sclerosis Podcast

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#100: The Future of MS Care. Can Digital Twins Predict Your Disease Progression? With Prof. Tjalf Ziemssen 51:34

hace 11 weeks51:34

51:34

Find out how digital twin technology based on AI and big data is transforming the treatment of Multiple Sclerosis by enabling personalized treatment, predicting disease progression, and optimizing patient management. You can read a shortened summary of the interview on my blog: https://ms-perspektive.com/100-digital-twin The concept of a digital twin is revolutionizing medicine, offering a new way to personalize treatments and predict disease progression. But what exactly does it mean for multiple sclerosis patients? In the 100th anniversary episode of the English MS-Perspektive Podcast, Prof. Tjalf Ziemssen, one of the world’s leading MS experts and innovators, explains how AI and big data are shaping the technology of digital twins to improve MS care. We discuss how this innovative approach differs from traditional monitoring tools, its potential for predicting disease progression, and how it could help neurologists adjust treatments sooner. Beyond medical care, digital twins can also support lifestyle adjustments and rehabilitation strategies. And they can show patients whether they are being well cared for or missing important checkups. Find out more about the real-world applications, current challenges and future possibilities of digital twin technology for people with MS. Sie sehen gerade einen Platzhalterinhalt von Podcast Player. Um auf den eigentlichen Inhalt zuzugreifen, klicken Sie auf den Button unten. Bitte beachten Sie, dass dabei Daten an Drittanbieter weitergegeben werden. Table of Contents Introduction Potential Benefits for MS Patients Realistic Applications & Current Challenges The Future of Digital Twins in MS Treatment Closing Thoughts & Call to Action Where can interested listeners follow your research or get involved? Prof. Tjalf Ziemssen: You can follow my work through academic publications , MS research platforms, and social media channels. We also encourage those interested to engage with patient organizations that support digital health initiatives. --- See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.…

MS-Perspektive - The Multiple Sclerosis Podcast

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#099: Insights from Groundbreaking MS Studies on Risks, Trends, and Equity an ECTRIMS Special 25:52

hace 12 weeks25:52

25:52

Learn more about epidemiology of MS including risks, trends and where clincial trials need to be revised for better equity. You can read the full article on my blog: https://ms-perspektive.com/99-epidemiology In this overview of papers from ECTRIMS 2024, I have selected studies that look at development and frequency and influence progression. You will learn about the role of Epstein-Barr virus infections and the effects of social and health inequalities on the course of MS. These studies also highlight the growing need for inclusion in clinical trials and the importance of monitoring MS trends worldwide. By exploring these insights, we can better understand the complexities of MS and learn how they shape the future of care and research for the MS community. Table of Contents 1. Risk and onset of multiple sclerosis after infectious mononucleosis (IM): a population-based study of >650,000 cases of IM 2. Rising prevalence of Multiple Sclerosis in Switzerland – Results from the Swiss Multiple Sclerosis Registry 3. Multiple Sclerosis in the Greenlandic population 4. African American and Non-Hispanic White people with multiple sclerosis: social determinants of health and health inequities. 5. Clinical Trial Awareness among African Americans --- See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.…

MS-Perspektive - The Multiple Sclerosis Podcast

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#098: New Research for Managing Primary Progressive Multiple Sclerosis (PPMS) an ECTRIMS Special 31:22

hace 13 weeks31:22

31:22

Latest treatments and research presented at ECTRIMS 2024 for managing primary progressive MS (PPMS). including innovative therapies like CAR T-cell therapy. You can read the full article on my blog: https://ms-perspektive.com/098-ppms-ectrims Primary Progressive Multiple Sclerosis (PPMS) presents unique challenges, as it often worsens without relapses and can significantly impact daily life. However, the growing body of research and treatment options is providing new hope for managing this condition. From exploring the effectiveness of established therapies like Ocrelizumab to cutting-edge advancements in CAR T-cell treatments, scientists and healthcare providers are uncovering ways to slow progression, improve outcomes, and enhance quality of life. This summary from ECTRIMS 2024 dives into the latest studies and innovations, offering insights to empower your MS journey. Table of Contents 1. Anti-CD20 therapies in drug-naive primary progressive multiple sclerosis patients: A multicenter real-life study 2. Design of KYSA-7, A Phase 2, Open-Label, Randomized, Multicenter Study of KYV-101, an Autologous Fully Human Anti-CD19 Chimeric Antigen Receptor (CAR) T-Cell Therapy, in Treatment Refractory Primary and Secondary Progressive Multiple Sclerosis 3. Efficacy and security of ocrelizumab in patients with primary progressive multiple sclerosis (ppms) in a tertiary care hospital multiple sclerosis unit 4. GA Depot (long-acting IM injection of glatiramer acetate) Impact on EDSS stability in Relapsing forms of Multiple Sclerosis (RMS) and Primary Progressive Multiple Sclerosis (PPMS) 5. Impact of age on safety and effectiveness outcomes in persons with relapsing and primary progressive multiple sclerosis treated with ocrelizumab in the German real-world CONFIDENCE study 6. Brain Volume Maps Identify Primary Progressive Multiple Sclerosis Patients at High Risk of Accelerated Atrophy --- Living with PPMS can feel overwhelming at times, but you are not alone. Research is advancing rapidly, with treatments and approaches designed to help slow progression, maintain independence, and enhance quality of life. Whether it’s monitoring your brain health, considering therapies like Ocrelizumab or GA Depot, or staying informed about revolutionary trials like CAR T-cell therapy, there is a growing arsenal of options to explore. Remember, your journey with MS is unique, and the best path forward is one tailored to your needs in collaboration with your healthcare team. Stay proactive, prioritize your well-being, and take comfort in knowing that science, advocacy, and community support are on your side. Every small step—whether it’s discussing a new treatment or making a lifestyle change—can bring you closer to a brighter future. Keep believing in your strength and the progress that’s being made for us and our community. See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.…

MS-Perspektive - The Multiple Sclerosis Podcast

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#097: Late-Onset Multiple Sclerosis (LOMS): Symptoms, treatment options, and prognosis with Dr. Abdulkadir Tunc 28:55

hace 14 weeks28:55

28:55

Discover expert insights on Late-Onset Multiple Sclerosis (LOMS) from Assoc. Prof. Dr. Abdulkadir Tunç, a leading neurologist dedicated to advancing MS care and improving lives. You can read the interview on my blog: https://ms-perspektive.com/97-loms I am pleased to welcome Associate Professor Dr. Abdulkadir Tunç in this interview, a neurologist who has dedicated his career to understanding and treating multiple sclerosis (MS), including late-onset multiple sclerosis (LOMS). Dr. Tunç is passionate about helping people overcome the challenges of MS and improve their quality of life through personalized care and innovative research. Dr. Tunç’s continuing education, including his graduation from the renowned International Charcot MS Master’s Program, has given him an in-depth knowledge of the complexities of MS. He heads a neuroimmunology clinic at Sakarya University in Turkey, where he and his team specialize in finding the best treatments for each patient’s individual needs. Today, he shares insights into the management of LOMS and tips on how patients can live well with it. Table of Contents Introduction – Who is Assoc. Prof. Dr. Abdulkadir Tunc? Definition and Differences in Onset of LOMS Immunotherapies and Treatment Decisions Repair and Recovery Mechanisms Symptomatic Treatment and Quality of Life Prognosis and Progression of LOMS New Developments: BTK Inhibitors Quickfire Q&A Session Farewell Introduction – Who is Assoc. Prof. Dr. Abdulkadir Tunc? Assoc. Prof. Dr. Abdulkadir Tunc: Thank you for having me; it’s a pleasure to be here. I am Assoc. Prof. Dr. Abdulkadir Tunç, a neurologist specializing in neuroimmunology, particularly MS and autoimmune neuromuscular diseases. For over 10 years, I have been closely working with MS patients, providing care and contributing to research aimed at improving their quality of life. I am proud to have completed the prestigious International Charcot MS Master program, which deepened my understanding of MS and its management. Currently, I run neuroimmunology clinics at Sakarya University, where my team and I focus on personalized approaches to treatment. Beyond my clinical work, I actively participate in our national neurology study group and regularly attend international congresses to stay updated on the latest innovations in the field. On a personal note, I’m married and a father of two wonderful children. When I’m not working, I find joy in playing court tennis and swimming regularly—activities that help me recharge and maintain balance in my life. I believe that staying active and curious, both professionally and personally, is key to living fully. Finally, what message of hope or encouragement would you like to share with individuals living with MS? Assoc. Prof. Dr. Abdulkadir Tunc: To everyone living with MS, remember that you are not defined by this disease. Each day, we’re making progress in understanding MS and developing new treatments to improve lives. Stay hopeful, stay proactive, and never hesitate to lean on your support network. Together, we’re stronger, and together, we’ll continue moving forward. How and where can interested people follow your research activities? Assoc. Prof. Dr. Abdulkadir Tunc: You can follow my research and updates through academic platforms like ResearchGate or LinkedIn , where I share my latest publications and projects. I also collaborate with the MSBase Registry and participate in international MS-focused events, so stay tuned for updates from these communities as well. --- See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.…

MS-Perspektive - The Multiple Sclerosis Podcast

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#096: From Fatigue to Focus. The Power of Sleep and Exercise in Managing MS an ECTRIMS Special 27:16

hace 15 weeks27:16

27:16

Improving sleep quality is vital for managing MS, reducing fatigue, enhancing cognitive function, and boosting overall well-being. You can find the complete summary on my blog: https://ms-perspektive.com/096-sleep Sleep is one of the most critical yet often underestimated aspects of managing MS. For many of us living with MS, poor sleep can worsen fatigue, brain fog, and other symptoms, making daily life even more challenging. The good news is that improving your sleep isn’t just possible—it can lead to meaningful improvements in your energy, mood, and overall well-being. In this summary from ECTRIMS 2024 papers, I’ll explore recent research on how sleep and physical activity interact in MS, along with tips to help you get the restorative rest you deserve. Table of Contents 1. Assessment of sleep quality and its relationship with physical activity in patients with Relapsing-Remiting Multiple Sclerosis 2. Sleep disorders and fatigue in multiple sclerosis: association and interaction. 3. Relationship between sleep disorders and information processing speed in multiple sclerosis 4. Ketogenic Diet in patients with Multiple Sclerosis: effect on Fatigue, Quality of Sleep and Sleepiness. 5. Adolescent sleep patterns, genetic predisposition, and risk of multiple sclerosis Good sleep is a cornerstone of managing MS and improving your quality of life. Small changes, like a consistent bedtime routine or light exercise, can have a big impact over time. Remember, you’re not alone in this journey, and each night of better rest brings you closer to more energized and fulfilling days. Take it one step—or one restful night—at a time, and know that you’re making a powerful investment in your health and well-being. You’ve got this! --- See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.…

MS-Perspektive - The Multiple Sclerosis Podcast

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#095: Hidden Challenges – Exploring Smoldering MS with Prof. Gavin Giovannoni 1:03:29

hace 16 weeks1:03:29

1:03:29

Prof. Gavin Giovannoni explores the complexities of multiple sclerosis, the concept of "smoldering MS," and future treatment strategies. You can find the full transcript of the interview to read on my blog: https://ms-perspektive.com/95-smoldering-ms Welcome to today’s interview, in which I am accompanied by one of the most influential personalities in the field of multiple sclerosis, Prof. Gavin Giovannoni. Prof. Giovannoni is a renowned neurologist at the Royal London Hospital and a professor at Queen Mary University in London. Originally from South Africa, he has dedicated his career to understanding, treating and advancing research in multiple sclerosis (MS). Prof. Giovannoni is recognized for his groundbreaking insights and patient-centered approach and has significantly contributed to how we view and manage MS, particularly through his work on the concept of ’smoldering MS‘. In this interview, we’ll tap into his expertise and explore the complexities of MS, the evolving understanding of “smoldering MS”, and the future of treatment and management strategies. Whether you are a patient, carer, or healthcare professional, this conversation promises to be both informative and empowering. Table of Contents Introduction – Who is Prof. Gavin Giovannoni? Understanding Smoldering MS Treatment and Management Approaches Patient Perspectives and Challenges Quickfire Q&A Session Farewell Introduction – Who is Prof. Gavin Giovannoni? I am a neurologist at the Royal London Hospital and a professor at Queen Mary University in London. Originally from South Africa, I focus on research and treatment innovations in multiple sclerosis (MS), aiming to improve patient outcomes. Gavin, what message of hope would you like to share with people living with MS? There has never been a more promising time for MS research and care. With advancements in treatments and diagnostics, we are moving closer to a future where MS is not only manageable but potentially curable. Stay hopeful and proactive in managing your health. Where can interested people learn more about your work? I have a thing called MS Selfie. It stands for MS Self Management . Now, there’s a newsletter that’s on Substack. They can register for that. And then there’s a microsite. That’s a curated site for people for self-management. I usually do one or two newsletters a week. --- See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.…

MS-Perspektive - The Multiple Sclerosis Podcast

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#094: Effects of the Mediterranean diet on MS an ECTRIMS Special 27:55

hace 17 weeks27:55

27:55

The mediterranean diet is healthy, tasty and contributes to a better quality of life when having MS from fatigue to brain health to mood. You can read the full article on my blog: https://ms-perspektive.com/94-mediterranean-diet This time, I have compiled papers on the Mediterranean diet that were presented at ECTRIMS 2024. The diet, which is high in fresh vegetables, fruits, nuts, olive oil, whole grains, and lean proteins, has been recommended for a long time. And the good thing is that it is more of a dietary approach that emphasizes healthy eating rather than prohibitions. The six studies presented show you how small lifestyle changes can have a big impact on your health and well-being. For example, the Mediterranean diet can support brain health, slow the progression of the disease, improve quality of life and even alleviate symptoms such as fatigue, anxiety and depression. Let these findings inspire you to make some delicious and health-promoting changes to your diet! Table of Contents 1. High adherence to the Mediterranean diet influences progressive Multiple Sclerosis course 2. Mediterranean Diet is Associated with a Proxy for Atrophy in Multiple Sclerosis 3. Mediterranean diet improves the quality of life in patients with Relapsing-remitting multiple sclerosis: our experience 4. Factors affecting psychological well-being index, adherence to medication, and Mediterranean diet in patients with multiple sclerosis 5. Differential DNA methylation significantly mediates the associations of Mediterranean diet with MS onset risk: results from the Ausimmune incident case-control study 6. A Higher Mediterranean Diet Score is Prospectively Associated with Better Mental Health and Quality of Life in a National Multiple Sclerosis Cohort --- See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.…

MS-Perspektive - The Multiple Sclerosis Podcast

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#093: Aging with MS an ECTRIMS Special 33:07

hace 18 weeks33:07

33:07

Explore aging's impact on MS, highlighting research on cognition, inflammation, brain changes, and treatments. You can read the text version on my blog: https://ms-perspektive.com/093-aging-with-ms Living with multiple sclerosis in old age presents a unique challenge in understanding how the disease interacts with the natural aging process. This special ECTRIMS Review delves into groundbreaking studies exploring aging with MS, focusing on topics such as cognitive health, inflammation, brain changes, and diagnostic tools like OCT. Whether you are gaining insights into how MS develops in older age or looking for ways to proactively manage your health, this episode is packed with valuable information to help you navigate your path with confidence and knowledge. Table of Contents 1. Aging in People with Multiple Sclerosis: Cognitive Characteristics 2. Inflammaging and multiple sclerosis: inevitable partners in aging? 3. Aging intervenes in relationship between OCT and clinical or MRI outcome measures 4. Enlarged perivascular spaces are associated with brain microangiopathy and aging in multiple sclerosis 5. Levraging immunosenescence cellular signatures to evaluate the "immune-age": moving towards precision medicine in multiple sclerosis 6. Durable efficacy of cladribine tablets in an aging (> 50 years of age) MS patient population- A Real-World Experience --- Aging with MS can bring changes, but it also brings opportunities to refine the way you manage your disease. From understanding cognitive changes to taking advantage of new treatments and monitoring brain health, it’s important to stay informed and proactive. Remember: knowledge is power, and with the right strategies and support, you can continue to live a full life, regardless of your age. If any of these insights resonate with you, don’t hesitate to discuss them with your medical team and see how they can be applied to your treatment. See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.…

MS-Perspektive - The Multiple Sclerosis Podcast

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#092: Empowering the MS Community: Advocacy, Diversity, and Inclusion with patient expert Roxy Murray 49:15

hace 19 weeks49:15

49:15

Roxy wants to empower underrepresented groups such as people of color or the LGBTQIA+ community to increase awareness of diversity in MS. You can read the short version of the interview here: https://ms-perspektive.com//92-roxy-murray In this episode, I am joined by Roxy Murray, also known as the “Multiple Sclerosis Fashionista” . Roxy is a passionate MS advocate, diversity and inclusion specialist, and a powerful voice for underrepresented communities in the chronic disease space. After being misdiagnosed and undergoing invasive treatments for eight years, Roxy turned her frustration into a drive for empowerment and advocacy. In our conversation, we delve into Roxy’s personal journey with MS, the challenges she faced as a young, queer woman of color in the healthcare system, and the ways she uses art, fashion , and community building to make the unseen seen. We also discuss the unique issues faced by LGBTQIA+ individuals with chronic illnesses and how representation in advocacy campaigns can drive meaningful change. Roxy’s message is clear: empowered patients empower others . Whether it’s through her bold fashion choices, storytelling on her podcast Sick and Sickening , or tireless advocacy for diversity, Roxy shows us that living with MS doesn’t mean sacrificing your identity, style, or voice. So listen in or read the short version of the interview and let Roxy’s energy and attitude encourage you to accept yourself as you are, no matter what challenges you face. Table of Contents Introduction - Who is Roxy Murray? Personal Experiences and Coping Strategies Diversity and Inclusion in Chronic Illness Advocacy Empowerment and Community Building The Role of Art, Design, and Fashion in Advocacy The Sick and Sickening Podcast: Goals and Impact Quickfire Q&A Session Farewell Introduction - Who is Roxy Murray? My name is Roxy Murray. I’ve been living with relapsing-remitting MS for 18 years, literally half my life. My first symptoms appeared when I was 18—I woke up with blindness in my right eye and double vision in my left. It was terrifying. At first, doctors suspected a brain tumor, then diagnosed me with lupus and other conditions like benign intracranial hypertension and anti-phospholipid syndrome. For eight years, I underwent invasive procedures like lumbar punctures every six to eight weeks without a correct diagnosis. Finally, at 26, after meeting a neurologist who took a fresh approach, I was correctly diagnosed with MS. She tested my spinal fluid and discovered oligoclonal bands. The mix of relief and anger I felt was overwhelming—I finally had an answer, but I had also endured years of unnecessary trauma. What message of hope would you like to share with those living with MS? You’re not alone. There’s a global community of MS warriors ready to support you at any time. How and where can interested people find you online? My website is www.themultiplesclerosisfashionista.com . I’m also on Instagram as @themultiplesclerosisfashionista and on LinkedIn as Roxy Murray. --- See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.…

MS-Perspektive - The Multiple Sclerosis Podcast

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#091: New treatment strategies in MS an ECTRIMS Special 27:06

hace 20 weeks27:06

27:06

Learn more about new treatment for MS, focusing on innovative therapies like engineered vesicles, CAR-T, CD40L and high-dose vitamin D. To read the full article visit my blog article: https://ms-perspektive.com/091-new-treatment-strategies This time, I will present some studies on new treatment options for MS that show promising results and were presented at ECTRIMS 2024. Some candidates are not that new, such as high-dose vitamin D, but the key here is the long-term observation of a large number of MS patients under clearly defined conditions. Furthermore, there are engineered extracellular vesicles (EVs), CAR-T cell therapies and CD40L inhibitors such as frexalimab. These therapies represent a shift towards targeted treatments that aim to modulate the immune system in a more precise way, without the severe side effects of current medications. It’s about the research behind these novel approaches, their potential benefits, and the possibility of achieving better outcomes for patients, especially in the progressive stages of the disease. Listen to the episode or read the post to stay up to date on how these innovations could change the future of MS treatment. Table of Contents Why are new therapies important? Engineered small extracellular vesicles targeting regulatory T cells via CD40L signaling in multiple sclerosis Overview of CAR-T therapy in autoimmune diseases Future of new therapies in MS: CAR-T, CD40L and others Long-term outcomes of phase-1 study of neural stem cell transplantation in progressive multiple sclerosis High-dose cholecalciferol reduces multiple sclerosis disease activity after a clinically isolated syndrome : results of a 24-month placebo-controlled randomized trial (D-lay MS) Safety and Efficacy of Frexalimab in the Treatment of Relapsing Multiple Sclerosis: 18-month Results from the Phase 2 Open-Label Extension See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.…

MS-Perspektive - The Multiple Sclerosis Podcast

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#090: Empowering the black MS community – advocacy, awareness, and support with Natalie Diana Busari 1:12:56

hace 21 weeks1:12:56

1:12:56

Natalie focuses primarily on advocacy, awareness and support in her work to empower women and girls from the black MS community. You can read the whole interview on my blog: https://ms-perspektive.com/90-natalie-diana-busari Living with multiple sclerosis can be an isolating experience, but what happens when you feel even more invisible because of your community, culture or ethnicity? I am delighted to be speaking today with Natalie Diana Busari, the founder and CEO of The Nerve Of My Multiple Sclerosis CIC . Natalie is a patient advocate dedicated to addressing the challenges faced by Black people living with MS, particularly Black women and girls, who are often underrepresented and underserved in research. Through her organization, Natalie is not only amplifying the voices of marginalized groups, but also creating much-needed resources to empower individuals and build a more inclusive MS community. Whether it’s advocating for better representation in research, sharing personal experiences to inspire others, or helping patients navigate the healthcare system, Natalie’s work supports many people in their everyday lives. In this episode, we will explore her journey from diagnosis to advocacy, discuss the unique challenges faced by Black people with MS, and learn about the initiatives that Natalie’s organization is driving to create lasting change. If you are seeking a deeper understanding of the diversity within the MS community or are a patient looking for empowerment and support, this interview is for you. Be inspired by Natalie’s story, her resilience and her vision for a future in which inclusion and equality are the norm in MS care. Table of Contents Introduction - who is Natalie Diana Busari? Personal and Professional Journey Health Inequalities and Representation Impact of the Patient Organisation and Advocacy Work Bridging the Gap in MS Research and Clinical Trials Empowerment and Awareness Quickfire Q&A Session Farewell Introduction - who is Natalie Diana Busari? Natalie Diana Busari is the founder of „The Nerve Of My Multiple Sclerosis CIC.“ This organisation is dedicated to supporting and representing Black individuals living with multiple sclerosis, with a primary focus on Black women and girls. Fun Fact: Natalie is passionate about design and enjoys drawing in her spare time. She also has a background in web design and development, which continues to influence her work today. Finally, what message of hope or encouragement would you like to share with individuals living with MS? To individuals living with MS: remember that there is life beyond diagnosis. You are not alone; there is a supportive community ready to help you navigate this journey. How and where can interested people find you online? You can find Natalie online through „The Nerve Of My Multiple Sclerosis.“ Stay tuned for updates as they are currently working on enhancing their online presence! But in the mean time you can type “the nerve of my ms on most social media platforms and we will be there. Thank you for tuning in! Instagram Facebook TikTok YouTube LinkedIn X / Twitter Website --- It’s fantastic and very much needed to have people like Natalie around to raise awareness for underrepresented groups of MS patients. And I’m sure that she will keep on making a difference. See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.…

MS-Perspektive - The Multiple Sclerosis Podcast

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#089: Understanding the Hidden Challenges of MS: Sexual, Bladder, and Bowel Health an ECTRIMS Special 22:40

hace 22 weeks22:40

22:40

Learn more about the impact of sexual, bladder, and bowel issues in MS and the importance of tailored care to improve quality of life. You can read the corresponding article here: https://ms-perspektive.com/89-sexual-bladder-bowel Living with MS means coping with a complex mix of symptoms that can affect both physical and emotional well-being. These include sensitive topics such as sexual health and bladder or bowel problems – issues that are not always discussed openly but are incredibly important for quality of life. Recent research and initiatives are shedding light on these areas and offering new insights and practical solutions for better care. In this summary of topics presented at ECTRIMS 2024, I look at the results of five recent studies addressing sexual health in MS, highlighting its connection to mood, fatigue and overall quality of life; Bladder and bowel dysfunction, which is common but often overlooked, and how early treatment can make a big difference. Innovative approaches to care, including new training programs for healthcare professionals that aim to improve support for people with MS. You’ll gain insights into how to address these challenges. Whether it’s talking to your doctor about symptoms, exploring new treatment options, or just knowing you’re not alone, this post is designed to empower and support you on your MS journey. Table of Contents 1. Sexual Dysfunction in Patients with Multiple Sclerosis in an Algeria Cohort 2. The importance of investigating sexual and sphincter disorders in people with multiple sclerosis: evaluation of their association with clinical features and impact on quality of life. 3. An Absence of Pelvic Floor Physical Therapy Referrals in MS Patients Experiencing Bladder Dysfunction 4. Bladder and bowel problems significantly affect well-being in individuals with multiple sclerosis - a cross-sectional study 5. Creating high quality bite size training for Multiple sclerosis (MS) bladder and bowel. An international initiative to enhance awareness of bladder and bowel care in patients with MS --- Please don't be shy. Talk about all your symptoms and get help. Your quality of life is at stake, and there are many options available, so there is likely to be support for your individual problem. See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.…

MS-Perspektive - The Multiple Sclerosis Podcast

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#088: Immune Tolerance and MS. How the RED4MS Study Could Change MS Treatment with Dr. Andreas Lutterotti 23:26

hace 23 weeks23:26

23:26

Andreas Lutterotti explains the mode of action, the concept of the early clinical trial RED4MS, and what a success could mean for patients. You can read through all questions and answers on my blog: https://ms-perspektive.com/88-red4ms Multiple sclerosis is one of the absolute success stories in terms of disease-modifying therapy. Nevertheless, the search for new concepts continues and the RED4MS study is looking in a new direction. Neurologist Dr. Andreas Lutterotti and his colleagues are researching and developing a novel approach to retraining the immune system. Find out more about the RED4MS study and how this therapy aims to reduce the symptoms of MS while maintaining normal immune function, offering hope for more targeted and safer treatment. Dr. Lutterotti provides insights into the study's objectives, patient eligibility, and what participants can expect. This early study is initially concerned with exploring the safety of the therapy. Only in the second step will the right dose be found that hits the sweet spot between efficacy and tolerability. Find out more about the possible effects of the therapy on daily life, the strict safety measures, and what might happen if the results are positive. Table of Contents Introduction – Who is Dr. Andreas Lutterotti? RED4MS: Overview of the Therapy and Potential Benefits RED4MS: Patient Experience and Eligibility RED4MS: Impact of the Therapy and Safety Monitoring RED4MS: Dosing and Administration RED4MS: Effectiveness and Expected Outcomes RED4MS: Long-term Implications and Availability Quickfire Q&A Session Farewell Introduction – Who is Dr. Andreas Lutterotti? I’m Andreas Lutterotti, originally from Austria, now living in Switzerland. I’m a neurologist with a focus on MS and a Chief Medical Officer at Cellaris AG. I’m married, have three children, and enjoy biking and traveling with my family. Finally, what message of hope or encouragement would you like to share with the listeners? Treatment development in MS has been very successful in a relatively short period of time. With more focus neuroprotective/-regenerative therapies and improvement of symptoms like fatigue we will hopefully improve the life of patients with MS in the future. How and where can interested people follow your research activities? www.cellerys.com www.clinicaltrials.gov (contains a list of participating centers) The following countries participate in the trial: Germany Czech Republic Switzerland Italy --- Good luck with the clinical trial. Sounds like a promising mode of action. See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.…

MS-Perspektive - The Multiple Sclerosis Podcast

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#087: Understanding and managing Neuromyelitis Optica (NMOSD). Latest Advances in treatment with Dr. Luis Alfonso Zarco 32:06

hace 24 weeks32:06

32:06

Neuromyelitis Optica Spectrum Disorder (NMOSD) need to be diagnosed and treated fast with highly effective therapies for a good prognosis. You can read the transcript of the interview here: https://ms-perspektive.com/87-luis-alfonso-zarco Living with neuromyelitis optica spectrum disorder (NMOSD) can be challenging. But the more you understand about the condition and the latest research and treatment options, the better off you’ll be. In this interview, Professor Luis Alfonso Zarco, a leading neurologist from Colombia who specializes in NMOSD, shares insights into the symptoms, treatments, and advances in care for this rare autoimmune disease. Whether you have just been diagnosed or have been living with NMOSD for years, this conversation will give you a deep dive into the fundamentals of NMOSD care, from early recognition to personalized treatment options. Learn why timely intervention is important, how NMOSD differs from multiple sclerosis, and what the future may hold for NMOSD patients. Table of Contents Introduction – Who is Prof. Dr. Luis Alfonso Zarco Montero? Understanding Neuromyelitis Optica Spectrum Disorder (NMOSD) NMOSD Disease Course and Prognosis First-Line Treatment Options for NMOSD Challenges and Accessibility in NMOSD Treatment Future Directions in NMOSD Treatment Quickfire Q&A Session Farewell Introduction – Who is Prof. Dr. Luis Alfonso Zarco Montero? I’m Luis Alfonso Zarco, born in Barranquilla on Colombia’s Caribbean coast. I studied medicine at Universidad del Norte in Barranquilla and later specialized in neurology at Pontificia Universidad Javeriana in Bogotá. I also trained as a neuroimmunologist at Universidad Autónoma de Barcelona, and I’m currently a candidate for a Master’s degree in Multiple Sclerosis from Dresden International University and a fellow of the European Charcot Foundation. Currently, I’m based in Bogotá, where I work at Hospital Universitario San Ignacio and serve as a neurology professor at Pontificia Universidad Javeriana. As director of the Neuroscience Department, I oversee cases of high complexity. I’m married to Angelica Rico, a nurse specializing in occupational health, and we have two children: Maria Paula, a lawyer, and Luis Carlos, studying finance. I’m passionate about my work, especially caring for patients with demyelinating diseases like NMOSD. This work is meaningful because these conditions affect people’s quality of life, their aspirations, and dreams, and we can play a key role in helping them achieve their goals. Finally, what message of hope or encouragement would you like to share with individuals living with NMOSD? You’re not alone. Many professionals worldwide are dedicated to finding new treatments and improving your quality of life. Stay strong, and remember, support is always available. How and where can interested people follow your research activities? Prof. Luis Alfonso Zarco: You can follow me on Instagram at @dr_zarco . --- Nele von Horsten: Thank you for sharing your insights on NMOSD, for your research, and for your dedication to patient care. Greetings to Colombia, and I hope to see you at a future ECTRIMS conference. Prof. Luis Alfonso Zarco: Thank you, Nele. It’s been a pleasure. --- See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.…

MS-Perspektive - The Multiple Sclerosis Podcast

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#086: Navigating Menopause with MS – Key insights on symptom progression, aging, and personalized care (ECTRIMS Special) 22:42

hace 25 weeks22:42

22:42

Find out how the menopause affects MS. What new research reveals about progression, symptom management, biological aging and quality of life. You can read the full article here: https://ms-perspektive.com/86-ectrims-menopause If you’re living with MS and approaching menopause, you might wonder how this life stage could impact your MS journey. Menopause is already a significant transition, bringing physical, emotional, and social changes. When combined with MS, it can feel even more complex, and many women have questions about how menopause might influence their symptoms, progression, and overall quality of life. Fortunately, new research is beginning to address these unique challenges, offering insights that could help guide care and support. In this summary, we’ll dive into several recent studies that explore different aspects of menopause and MS. From understanding if menopause affects disability levels and relapse rates, to investigating how menopause might influence biological aging in women with MS, these studies provide valuable findings. Notably, one project led by Queen Mary University in the UK took an innovative approach by involving women with MS in designing the research itself, making the results especially relevant to real-world experiences. Together, these studies offer a clearer picture of what menopause might mean for women with MS, and we’ll break down the key findings to help you understand what to expect and how this research might apply to your own journey. Table of Contents The influence of menopause on multiple sclerosis Optimising menopause management in MS through multi-stakeholder collaboration and pathway development Practical learnings from a co-designed qualitative study exploring patient experiences of multiple sclerosis and menopause Menopause affects DNA methylation and aging in women with multiple sclerosis Talk to Your Healthcare Provider for Personalized Support Talk to Your Healthcare Provider for Personalized Support If you have questions about how menopause might affect your MS, talk to your healthcare provider about any changes or symptoms you’re experiencing. They can help interpret new findings and offer guidance that’s tailored to your unique journey, supporting you in managing symptoms and maintaining your quality of life through this transition. --- See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.…

MS-Perspektive - The Multiple Sclerosis Podcast

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#085: ECTRIMS Special on innovative MS rehabilitation for better quality of life 17:58

hace 26 weeks17:58

17:58

New approaches to MS Rehabilitation: From Telerehab to Ocean Sailing and individualized trainings plans for improved wellness. You can read the complete article here: https://ms-perspektive.com/085-ectrims-rehab Rehabilitation for multiple sclerosis (MS) is rapidly evolving, with exciting new approaches tailored to the unique needs of people with progressive MS (PwPMS). Recent studies have explored how various types of personalized therapies can improve both physical and mental well-being, offering a wider range of options for supporting a fulfilling, active life with MS. The article discusses innovative rehabilitation methods such as cognitive-affective profiling, sleep optimization, offshore sailing, and tele-rehabilitation. Each approach offers its own benefits, allowing people with MS to explore therapies that fit their specific needs and lifestyle. Whether you are looking to improve your mental focus, increase your physical resilience, or gain more flexibility in your treatment plan, these insights offer inspiring insights into the future of MS rehabilitation. Table of Contents Cognitive-affective profiles in people with progressive Multiple Sclerosis (PwPMS): Implications for intensive multidisciplinary in-patient rehabilitation Poor sleep has a deleterious impact on health-related quality of life in people with multiple sclerosis - The Danish MS hospitals rehabilitation study Oceans of Hope: Sailing as rehabilitation How do people with MS themselves evaluate telerehabilitation interventions? --- See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.…

MS-Perspektive - The Multiple Sclerosis Podcast

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084: Vascular dysfunction and Multiple Sclerosis. How Your vessels Could Shape Your MS Journey with Dr. Jonathan Pansieri 48:01

hace 27 weeks48:01

48:01

Dr. Jonathan Pansieri explains how vascular dysfunction could worsen multiple sclerosis and become a target for future treatment approaches. You can read all questions and answers here: https://ms-perspektive.com/84-Vascular-dysfunction When it comes to multiple sclerosis (MS), you probably know that the immune system plays a role in attacking the nervous system. But what if your blood vessels also played an important role? In this interview, we dive into the fascinating link between vascular dysfunction and MS with insights from Dr. Jonathan Pansieri. From how the blood-brain barrier is disrupted, to how impaired blood flow can worsen inflammation, we explore how vascular issues could be affecting your journey with MS. Understanding this link could open new doors on treatment strategies and offer fresh hope to patients living with this complex disease. Table of Contents Introduction – Who is Dr. Jonathan Pansieri? Vascular dysfunction Impact on MS The Role of Microglia in MS Potential Applications of Genetic Research MS, Dementia, and Alzheimer's Quickfire Q&A Session Farewell Introduction – Who is Dr. Jonathan Pansieri? I am Dr Jonathan Pansieri, neuroscientist in the Medical Science Division of the University of Oxford, and a fellow from the UK-MS society. I am 36 years-old, living with my partner who is also a scientist in the Department of Surgery focusing on prostate cancer. I am a dog person, so I would love to have 2 big dogs in the near future, but I will need to adapt my schedule for that! If there is something else to say about me, as a French citizen, I miss so much the lovely French pastries that I’m trying to make my own croissant and pain au chocolat, but despite 5 years of training now, I definitely need to improve my skills, it is such a disaster so far… How and where can interested people follow your research activities? As an academic, I’m always dedicated to share our progresses with both the research community and individuals living with progressive MS. In addition, we regularly host patient information days in Oxford to present the latest in clinical care, symptom management, and research advancements, so stay tune! You can also follow my work on Twitter ( @group_deluca and @JPansieri ), where I share insights and updates (though I wish I could share more!). Additionally, you can connect with me on ResearchGate ( https://www.researchgate.net/profile/Jonathan-Pansieri ) and LinkedIn ( https://www.linkedin.com/in/jonathan-pansieri-11887bb5 /), where I’m always open to discussions. Thank you all for your support—let’s keep pushing forward together! --- Many thanks to Jonathan for the exciting interview and also to all his colleagues working on the project. It sounds very promising. See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.…

MS-Perspektive - The Multiple Sclerosis Podcast

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#083: ECTRIMS Special on De-escalation and discontinuation of therapies for MS – What does it mean and how can it work? 33:08

hace 28 weeks33:08

33:08

When can we consider de-escalation or even discontinuation of a high-efficient immunotherapy for MS without risking a disease worsening? You can read the full article on my blog: https://ms-perspektive.com/83-deescalation Hello and welcome to another summary of ECTRIMS 2024, this time on the topic of de-escalation and discontinuation of therapy. There was a scientific session on this topic with six lectures, moderated by Dr. Melinda Magyari and Prof. Bernhard Hemmer. And there were also individual posters. Except for one talk about NMOSD and MOGAD, all scientific contributions were about multiple sclerosis. I will present all the contributions and their results, some of which are still preliminary. After all, it is a topic that probably affects most of us. Can or should I switch my therapy from a high efficacy to a lower one or even stop it altogether at some point, and when is that a safe approach? Table of Contents What does de-escalation of therapy mean? Why is de-escalation a topic? Strategies for de-escalation with anti CD20 therapies Discontinuation and de-escalation in NMOSD and MOGAD Guiding Treatment Deescalation in Relapsing Remitting Multiple Sclerosis Alternate-Day Fingolimod Tapering: Impact on Rebound Disease Activity in Patients with Multiple Sclerosis Short-term B cell depletion results in medication-free, long-term freedom from disease activity and correction of immune tolerance defect in a subset of people with relapsing MS B-cell tailored dosing versus standard interval dosing of ocrelizumab in relapsing-onset MS –Interim analysis of a randomized controlled trial (BLOOMS trial) De-escalation treatment strategies in patients with relapsing-remitting multiple sclerosis in Austria Classification of the risk of disease reactivation after de-escalation/discontinuation of disease-modifying therapy in relapsing-remitting MS using the VIAADISC score --- See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.…

MS-Perspektive - The Multiple Sclerosis Podcast

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#082: Living with neuromyelitis optica (NMO) in Denmark with Leda Bresnov 39:30

hace 29 weeks39:30

39:30

Leda Bresnov shares her diagnosis, coping strategies, and insights on living with neuromyelitis optica (NMO) in Denmark. You can read all questions and answers on my blog: https://ms-perspektive.com/82-leda Meet NMO patient Leda Bresnov, a strong and inspiring woman who is originally from Brazil and has been living in Denmark since 1991. Leda, a wife and mother of two adult children, is overcoming the challenges of Neuromyelitis optica (NMO) and is trying to raise awareness of the disease. In this interview, Leda shares her personal journey with NMO, from the shock of her diagnosis to her coping strategies and the support systems she has found along the way. Through her story, she offers valuable insights into living with NMO in Denmark, how to advocate for yourself, and how to find hope and strength in the face of a rare disease. Table of Contents Introduction – Who is Leda Bresnov? Personal Experiences and Coping Strategies Treatment and Care in Denmark Challenges and Support Systems in Denmark Education, Awareness, and Advocacy Quickfire Q&A Session Farewell Introduction – Who is Leda Bresnov? Born and raised in Brazil, moved to Denmark in1991 to live with my husband.Together we have a daughter aged 23, a son aged 19, two dogs and a cat. I have a background as a laboratory technician and worked for the same company for 16 years, before the NMO. Finally, what message of hope or encouragement would you like to share with individuals living with NMOSD or MOGAD in Denmark? It is possible to have a good, meaningful life with NMOSD. How and where can interested people find you online? Email: ledabresnov@gmail.com On Facebook , Instagram , LinkedIn , X (Twitter) , TikTok as Leda Bresnov. --- Thank you very muh hfor all your efforts and being so active on social media Leda to get other people inspired and become active and to increase the awareness for NMOSD. See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.…

MS-Perspektive - The Multiple Sclerosis Podcast

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#081: Navigating Treatment and Support for MS, NMOSD, and MOGAD in Montenegro with Dr. Sanja Gluscevic 45:29

hace 30 weeks45:29

45:29

Dr. Sanja V. Gluscevic, a neurologist from Montenegro, specializes in MS, NMOSD and MOGAD, and is dedicated to patient care and advocacy. You can read all questions and answers on my blog: https://ms-perspektive.com/81-sanja-gluscevic Today I would like to introduce you to Dr. Sanja V. Gluscevic, a renowned neurologist who specializes in multiple sclerosis (MS) as well as other inflammatory diseases of the central nervous system and epilepsy. Hailing from Podgorica, the capital of Montenegro, Dr. Gluscevic has built her impressive career with dedication and passion to improve the lives of patients with neurological disorders. With extensive training and experience in leading medical centers, as well as her active involvement in international organizations and her own NGO, Dr. Gluscevic is not only an expert in her field, but also a passionate advocate for the education and support of patients with MS, NMOSD and MOGAD worldwide. Learn more about her personal motivation, her professional achievements and her efforts to raise awareness of brain diseases in Montenegro. Be inspired by her story, her knowledge and her tireless dedication to making a difference in the lives of people with MS. Table of Contents Introduction – Who is Dr. Sanja V. Gluscevic? Prevalence and Awareness of MS, NMOSD and MOGAD in Montenegro Quality of Life for MS, NMOSD and MOGAD Patients in Montenegro Access to Treatment and Support Services for MS, NMOSD and MOGAD Patients Social Support and Coping Mechanisms The Sumaira Foundation Quickfire Q&A Session Farewell Introduction – Who is Dr. Sanja V. Gluscevic? Hello Nele. Thank you very much for your kind invitation to participate in your esteemed podcast today. I am a neurologist specializing in MS, other inflammatory disorders of central nervous system and epilepsy. I come from Podgorica, the capital of Montenegro, a small and picturesque country in the Balkans, with approximately 620.000 inhabitants. I have completed my residency and fellowship training in epilepsy and clinical neurophysiology at the University of Belgrade, Medical School. During my tenure there, I had the privilege of learning from eminent figures in the realms of multiple sclerosis and epilepsy including professor Jelena Drulović, professor Šarlota Mesaroš, professor Dragoslav Sokić and professor Aleksandar J. Ristić. Currently I am engaged in the pursuit of my master’s degree in MS at the European Charcot Foundation (where I also serve as vice- chair of ECF young investigator/fellow) and PhD thesis in epilepsy at the University of Montenegro. I have also recently been appointed as a first Montenegrin ambassador of neurology and brain health by European academy of neurology (EAN). I am also honored to serve as the ambassador for The Sumaira Foundation, which, in my view, stands as the premier organization worldwide for NMOSD and MOGAD. The palpable engagement, energy, affection, and unwavering support within this vast and diverse community make it the epitome of a unified and inclusive family dedicated to these rare conditions. Beyond my personal endeavors, I take immense pride in fulfilling roles as a mother, a spouse, and a devoted owner of Russian wolfhound. My passion for exploring diverse cultures through travel is unwavering, and I find solace and inspiration in tranquil nature walks accompanied by classical and rock music, depending on a mood, while delving into the depths of literature exploring the intricacies of human behavior from psychological and neuroscientific perspective. Finally, what message of hope or encouragement would you like to share with the listeners? Never surrender! Hold onto hope! You are not navigating this journey alone. Your resilience and personal stories serve as the cornerstone of our advancement, inspiring us to intensify our research efforts. A vast global network of researchers, clinicians, and healthcare professionals stands behind you! The past decade has witnessed remarkable breakthroughs that have transformed treatment approaches, heralding a brighter future. Our collective aspiration is that one day, discussions will center not only on finding a better cure but on preventing these conditions altogether. Let us forge ahead with unwavering determination and shared purpose. How and where can interested people follow your research activities? Interested individuals can follow my research activities through my publications on academic platform (Researchgate), or on professional social media (LinkedIn). https://www.researchgate.net/profile/Sanja-Gluscevic-2 https://www.linkedin.com/in/sanja-v-gluscevic-🧠🧪📂-17a41b283 --- Thanks to Sanja for the insights and the great commitment to your patients. See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.…

MS-Perspektive - The Multiple Sclerosis Podcast

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#080: B-Cell Depletion – Ocrelizumab (Ocrevus), Ofatumumab (Kesimpta, Bonspri), Rituximab (Mabthera, Rituxan), Ublituximab (Briumvi) for active RRMS and SPMS, and early PPMS 30:40

hace 31 weeks30:40

30:40

Learn more about b-cell depletion, including Ocrevus, Kesimpta, Bonspri, Mabthera, Rituxan, and Briumvi, used for active RRMS, SPMS, and PPMS. You can read the full article on my blog: https://ms-perspektive.com/080-b-cell-depletion B-cell depletion therapies such as ocrelizumab (Ocrevus), ofatumumab (Kesimpta, Bonspri), rituximab (Mabthera, Rituxan) and ublituximab (Briumvi) have become important tools in the treatment of multiple sclerosis (MS). These treatments specifically target and deplete B cells, a type of immune cell involved in the inflammatory process of MS. B-cell therapies are considered to be some of the most specific and potent disease-modifying therapies (DMTs) available today, offering a tailored approach to reducing disease activity and progression. In this blog, we will explore how these therapies are classified within MS treatment options and what their approval status and efficacy mean for different patient populations. Please remember that I can only provide an overview here. Your neurologist and your MS nurse should advise you in detail on the right therapy for you. This is because they know your general state of health and you should also talk about your goals, wishes, fears and preferences so that these can be taken into account. Table of Contents General Information How are B-Cell Depletion – Ocrelizumab (Ocrevus), Ofatumumab (Kesimpta, Bonspri), Rituximab (Mabthera, Rituxan), Ublituximab (Briumvi) classified in immunotherapies? What are B-Cell Depletion – Ocrelizumab (Ocrevus), Ofatumumab (Kesimpta, Bonspri), Rituximab (Mabthera, Rituxan), Ublituximab (Briumvi) approved for? What is the situation for special patient groups? Who should avoid Ocrelizumab (Ocrevus), Ofatumumab (Kesimpta, Bonspri), Rituximab (Mabthera, Rituxan), Ublituximab (Briumvi)? How do Ocrelizumab (Ocrevus), Ofatumumab (Kesimpta, Bonspri), Rituximab (Mabthera, Rituxan), Ublituximab (Briumvi) work? How is it taken? How effective are Ocrelizumab (Ocrevus), ofatumumab (Kesimpta, Bonspri), rituximab (Mabthera, Rituxan), ublituximab (Briumvi)? Risks and side effects of Ocrelizumab (Ocrevus), ofatumumab (Kesimpta, Bonspri), rituximab (Mabthera, Rituxan), ublituximab (Briumvi) Vaccinations Sources Final note Sources I used the following sources to create the content: Lecture on pediatric multiple sclerosis by Prof. Dr. Jutta Gärtner as part of the Multiple Sclerosis Management Master’s program Lecture on B-cell depleting therapies by Prof. Dr. Xavier Montalban as part of the Multiple Sclerosis Management Master’s program Quality manual of the German KKNMS on ocrelizumab (Ocrevus) , ofatumumab (Kesimpta, Bonspri) , ublituximab (Briumvi) MS-Selfie Infocards by Prof. Dr. Gavin Giovannoni German Multiple Sclerosis and Fertility Registry (DMSKW) German DECIMS information on ocrelizumab --- You may also want to look at the posts on the other DMTs: #061: Dimethyl fumarate (Tecfidera) and diroximel fumarate (Vumerity) #065: Glatiramer acetate (Copaxone, Brabio) #068: Interferon-beta (Avonex, Betaferon, Extavia, Plegridy, Rebif) #070: Teriflunomide (Aubagio) #072: Natalizumab (Tysabri, Tyruko) for active relapsing remitting MS #074: S1P Modulators – Fingolimod (Gilenya), Ozanimod (Zeposia), Ponesimod (Ponvory), Siponimod (Mayzent) for active RRMS & SPMS #076: Alemtuzumab (Lemtrada, Campath) for highly active MS #078: Cladribine (Mavenclad, Leustat, Litak) for highly active MS See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.…

MS-Perspektive - The Multiple Sclerosis Podcast

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Special: ECTRIMS 2024 - Personalized MS treatments, genetic risk factors and the benefits of early, effective therapies for women and children 19:51

hace 32 weeks19:51

19:51

Personalized treatments, genetic risk factors, gender differences and the advantages of early, highly effective therapies. You can read the full article here: https://ms-perspektive.com/ectrims-2024-ww1 This year, ECTRIMS 2024 in Copenhagen, Denmark , will once again bring together leading experts in multiple sclerosis (MS) from around the world. The prestigious conference is the premier event for researchers, physicians and healthcare professionals all working towards a common goal: improving quality of life through groundbreaking research and advances in the treatment of MS and related diseases. The event, which is expected to attract around 9,000 attendees, promises a rich program of inspiring keynote addresses, exciting oral and poster presentations, and carefully curated scientific and educational sessions. In addition, there will be numerous opportunities for networking and connecting with the international MS community. I have brought you some exciting papers to start my coverage of this year’s event. From biomarkers that help predict disease progression to new insights into genetic risk factors and gender differences in treatment, these results underscore the growing importance of personalized care in the management of MS. Key findings include the benefits of early, high-potency treatments for children, the association of inherited genetic variants with MS risk, and the therapeutic inertia in the management of women with MS. These studies pave the way for more targeted and effective treatment strategies that could transform outcomes for people with MS worldwide. Table of Contents Early High Efficacy MS Treatment in Children Shows Long-Term Benefits New Genetic Discoveries Bring Personalized MS Treatments Closer for Diverse Populations Blood tests help to identify the progression of disabilities in MS at an early stage Unutilized opportunities: Why women with MS are less likely to receive highly effective therapies at an early stage References Long-term disability outcomes among children with multiple sclerosis treated with high-efficacy therapy, Sharmin, S. et al. (2024). Presented at ECTRIMS 2024. Mavridi, A., Bompou, M.E., Redmond, A. et al. (2024). Current and Emerging Treatment Options in Pediatric Onset Multiple Sclerosis. Sclerosis; 2(2):88-107. https://doi.org/10.3390/sclerosis2020007 Novel ancestry-specific and putative causal genetic variants for multiple sclerosis identified by an ancestry-informed regression and trans-ethnic fine-mapping analysis, McCauley, J.L., et al. (2024). Presented at ECTRIMS 2024. Serum neurofilament light chain and glial fibrillary acidic protein levels at disease onset unveil immunologic pathways of disability acquisition in multiple sclerosis, Monreal E., et al. (2024). Presented at ECTRIMS 2024. Meier S., Willemse E.A., Schaedelin S., et al. (2023). Serum Glial Fibrillary Acidic Protein Compared with Neurofilament Light Chain as a Biomarker for Disease Progression in Multiple Sclerosis. JAMA Neurol. , 80(3):287-297. doi:10.1001/jamaneurol.2022.5250 Lublin, F. D., Häring, D. A., Ganjgahi, H., et al. (2022). How patients with multiple sclerosis acquire disability. Brain: A Journal of Neurology , 145(9), 3147-3161. https://doi.org/10.1093/brain/awac016 Is there therapeutic inertia in women with MS? Vukusic, S., et al. (2024). Presented at ECTRIMS 2024. --- See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.…

MS-Perspektive - The Multiple Sclerosis Podcast

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#079: How your gut microbiome could influence Multiple Sclerosis with Prof. Dr. Natalia Szejko 44:52

hace 32 weeks44:52

44:52

Dr. Natalia Szejko reveals latest research on gut microbiome for MS, MOGAD, and NMOSD, offering new hope for managing these conditions. You can read all the questions and answers in the corresponding blog article: https://ms-perspektive.com/079-natalia-szejko Welcome to today’s episode. Whether you have MS, MOGAD (myelin oligodendrocyte glycoprotein antibody-associated disease), or NMOSD (neuromyelitis optica spectrum disorder), I’m excited to share some fascinating insights into the gut microbiome with you today. My guest today is Dr. Natalia Szejko, a dedicated neurologist and researcher specializing in these disorders. Dr. Szejko’s work focuses not only on better treatments but also on exploring innovative areas such as the role of the gut microbiome in disease progression. In our conversation today, we will explore the latest research and discuss how lifestyle changes such as diet can potentially impact our health. As someone who has first-hand experience with the challenges of these conditions, I am excited to offer you practical insights that can make a real difference in the treatment of MS, MOGAD, and NMOSD. So, stay tuned – there is a lot to be hopeful about! Table of Contents Introduction – Who is Dr. Natalia Szejko? Understanding the Gut Microbiome and Its Role in MS The Interaction Between Diet, Gut Microbiome, and MS Gut Microbiome as a Therapeutic Target Diagnostic and Predictive Potential Future Directions and Research Quickfire Q&A Session Farewell Introduction – Who is Dr. Natalia Szejko? My name is Natalia and um I’m a neurologist trained neurologist and I’ve done my studies and later my specialty in adult neurology in Poland and also I did my PhD there and during my training I had an opportunity to work with patients with MS and related disorders and it was like a year-long experience with a great team of researchers and clinicians who really taught me a lot about this disease and it was very inspiring. Now I’m completing a clinical and research fellowship in Calgary in Canada. And I’m a member of European Charcot Foundation. We have like a junior membership where we are fellows and I’m trying to be very active. I’m a member of the steering committee and also a member of TSF, The Sumaira Foundation, which is related to NMOSD and I’m the ambassador for Poland. In terms of my research and clinical interests, they are related to, for example, treatment of MS with alternative and complementary medicine, one of them is the gut microbiome. And now I have also conducted clinical trials on MS and related disorders. Finally, what message of hope or encouragement would you like to share with the listeners? First of all, I think it’s important to recognize that the field is developing very quickly. There are so many investigators and companies investing in this area, so don’t lose hope—even for those with more challenging forms of the disease, like primary progressive MS, that may not be responding well to current treatments. I believe we will have more treatment options soon. Another piece of advice is to join forces with other patients. There are many inspiring stories and organizations that can offer support. Getting involved can make a real difference. I’ve seen firsthand how supportive groups, not just for patients but also for caregivers, can be incredibly beneficial. Hearing these stories and sharing experiences can really help. Finally, I’m hopeful that patients will be more involved in research going forward. Your input is crucial—what you think makes a good intervention, what you’d like to see investigated. This is a message of hope: I hope you no longer feel excluded from the process. Overall, I believe there is real reason for optimism. How and where can interested people follow your research activities? You can find some of my studies on PubMed , and I’m also listed on the European Charcot Foundation website under the steering committee , where updates will be published. We’ve been quite active, and with Sarah, we’ve created a LinkedIn page for the European Charcot Foundation , where we’ll share more updates and information. Additionally, you can follow my work during conferences where I’ll present my research. I was really happy to be here today! --- Thank you, Dr. Natalia Szejko, for your incredible dedication to advancing research in MS, MOGAD, and NMOSD. Your work brings hope to so many of us living with these conditions, and we’re truly grateful for your passion and commitment to improving patient care and outcomes. See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.…

MS-Perspektive - The Multiple Sclerosis Podcast

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#078: Cladribine (Mavenclad, Leustat, Litak) for highly active MS 24:37

hace 33 weeks24:37

24:37

Cladribine (Mavenclad, Leustat, Litak) is an induction therapy the supresses the immun system and is used for highly active MS. You can read the complete article at: https://ms-perspektive.com/078-cladribine Cladribine (Mavenclad, Leustat, Litak) is an immunotherapy from the field of immunosuppressants that is used to treat highly active multiple sclerosis (MS). It belongs to the class of disease-modifying therapies (DMTs), which use depletion to target the immune system in order to prevent the progression of the disease. Find out more about the principle of induction therapies, how cladribine works, how effective it is and the potential risks associated with it. You will learn about the role of cladribine in MS therapy, its different forms and what patients should know when considering this treatment, particularly with regard to pregnancy, breastfeeding and long-term health monitoring. Please remember that I can only provide an overview here. Your neurologist and your MS nurse should advise you in detail about the right therapy for you. This is because they know your general state of health and you should also talk about your goals, wishes, fears and preferences so that these can be taken into account. Table of Contents General Information How is Cladribine (Mavenclad, Leustat, Litak) classified in immunotherapies? What is Cladribine (Mavenclad, Leustat, Litak) approved for? What is the situation for special patient groups? Who should avoid cladribine (Mavenclad, Leustat, Litak)? How does cladribine (Mavenclad, Leustat, Litak) work? How is it taken? How effective is cladribine (Mavenclad, Leustat, Litak)? Risks and side effects of cladribine (Mavenclad, Leustat, Litak) Vaccinations Sources Final note Sources I used the following sources to create the content: Lecture on Cladribine by Prof. Dr. Johann Sellner as part of the Master’s program Multiple Sclerosis Management Quality manual of the German KKNMS on cladribine (Mavenclad) MS-Selfie Infocards by Prof. Dr. Gavin Giovannoni German Multiple Sclerosis and Fertility Registry (DMSKW) German DECIMS information on cladribine --- You may also want to look at the posts on the other DMTs: #061: Dimethyl fumarate (Tecfidera) and diroximel fumarate (Vumerity) #065: Glatiramer acetate (Copaxone, Brabio) #068: Interferon-beta (Avonex, Betaferon, Extavia, Plegridy, Rebif) #070: Teriflunomide (Aubagio) #072: Natalizumab (Tysabri, Tyruko) for active relapsing remitting MS #074: S1P Modulators – Fingolimod (Gilenya), Ozanimod (Zeposia), Ponesimod (Ponvory), Siponimod (Mayzent) for active RRMS & SPMS #076: Alemtuzumab (Lemtrada, Campath) for highly active Multiple Sclerosis See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.…

MS-Perspektive - The Multiple Sclerosis Podcast

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#077: Tailoring MS Treatment. The Impact of Mood Disorders on Patient Care with Dr. Emine Rabia Koç 37:47

hace 34 weeks37:47

37:47

Explore Dr. Emine Rabia Koç's insights on blending emotional and physical health for a holistic approach to MS treatment. You can find the written version as blog article here: https://ms-perspektive.com/77-emine-rabia-koc Today I speak with Dr. Emine Rabia Koç about the important intersection between mood disorders and patient care in multiple sclerosis. As an associate professor at Uludağ University Faculty of Medicine and a dedicated neurologist, Dr. Koç brings a wealth of knowledge and compassion to the MS community. In this interview, Dr. Koç discusses the profound impact that mood disorders have on MS treatment and patient well-being. From her personal journey into the field of neuroimmunology to practical advice for patients and caregivers, Dr. Koç provides insights that underscore the importance of comprehensive care strategies that address both the physical and emotional facets of living with MS. Table of Contents Introduction – Who is Emine Rabia Koç? Impact of COVID-19 Pandemic and Support for Future Challenges Understanding Mood Disorders in MS Clinical Relevance and Treatment Implications Best Practices and Recommendations Screening and Assessment Quickfire Q&A Session Farewell Introduction – Who is Emine Rabia Koç? Thank you for the invitation. I am Emine Rabia Koç, Associate Professor at Uludağ University, Faculty of Medicine, Department of Neurology. Working in the field of neurology is a passion for me. During my neurology residency, neuroimmunology and autoimmune diseases of the nervous system were areas that particularly interested me. After completing my residency, I started working and doing research in this field. The more I learned, the more I loved it, and I continued my education and training in this field. Since 2022, I have been a student in the MS Master program organized in partnership with the University of Dresden and the European Charcot MS Foundation. I am also an ambassador for the Sumaira Foundation, the voice of NMOSD and MOGAD patients worldwide. I try to balance my life in this cycle; I am married and have two children. The moments I spend with them are precious to me. I like walking in nature, swimming, cycling, reading books, and visiting different places and cultures in my free time. How and where can interested people follow your research activities? If you’re interested in following my research activities, you can find updates on my work through my university’s website and social media platforms. I also regularly share insights and findings on LinkedIn (Emine Rabia Koç) , instagram(drkocrabia ) where I engage with the MS community. I encourage everyone to stay connected, as collaboration and communication are key to advancing our understanding of MS. --- Many thanks to Rabia for giving us some insight views into the interaction of mood disorders and MS and for all her efforts that contribute in better health outcomes for her patients. See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.…

MS-Perspektive - The Multiple Sclerosis Podcast

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#076: Alemtuzumab (Lemtrada, Campath) for highly active relapsing MS 27:06

hace 35 weeks27:06

27:06

Alemtuzumab (Lemtrada, Campath) is a DMT to treat highly active MS and has long-lasting effects and potential severe side effects. You can read the full article on my blog: https://ms-perspektive.com/076-alemtuzumab This time the focus is on alemtuzumab (Lemtrada, Campath). It is one of the highly effective immunotherapies and, in a subgroup of patients with highly active MS, even enables disease activity to be halted for more than five years. Due to its long-lasting effects on the immune system and sometimes severe side effects, it is used relatively sparingly. It is used as a disease-modifying therapy for active multiple sclerosis, both in relapsing forms and, following FDA approval, also in active SPMS. Due to its mechanism of action, alemtuzumab leads to immediate immune cell depletion of CD52-positive immune cells (primarily T cells and B cells). It is therefore used, for example, in patients with massive inflammatory activity who are at risk of a rapid increase in disability. Please remember that I can only provide an overview here. Your neurologist and your MS nurse should advise you in detail about the right therapy for you. This is because they know your general state of health and you should also talk about your goals, wishes, fears and preferences so that these can be taken into account. Table of Contents General Information How is Alemtuzumab (Lemtrada, Campath) classified in immunotherapies? What is Alemtuzumab (Lemtrada, Campath) approved for? What is the situation for special patient groups? Who should avoid alemtuzumab (Lemtrada, Campath)? How does alemtuzumab (Lemtrada, Campath) work? How is it taken? How effective is alemtuzumab (Lemtrada, Campath)? Risks and side effects of alemtuzumab (Lemtrada, Campath) Vaccinations Sources Final note Sources I used the following sources to create the content: Quality manual of the German KKNMS on alemtuzumab (Lemtrada, Campath) MS-Selfie Infocards by Prof. Dr. Gavin Giovannoni German Multiple Sclerosis and Fertility Registry (DMSKW) German DECIMS information on alemtuzumab --- You may also want to look at the posts on the other DMTs: #061: Dimethyl fumarate (Tecfidera) and diroximel fumarate (Vumerity) #065: Glatiramer acetate (Copaxone, Brabio) #068: Interferon-beta (Avonex, Betaferon, Extavia, Plegridy, Rebif) #070: Teriflunomide (Aubagio) #072: Natalizumab (Tysabri, Tyruko) for active relapsing remitting MS #074: S1P Modulators – Fingolimod (Gilenya), Ozanimod (Zeposia), Ponesimod (Ponvory), Siponimod (Mayzent) for active RRMS & SPMS See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.…

MS-Perspektive - The Multiple Sclerosis Podcast

1
#075: Decoding the EDSS Score. How It's Measured and What It Means 7:41

hace 36 weeks7:41

7:41

The EDSS score helps neurologists to measure the progression of MS as it measures limitations in functional systems. You can find the full article at: https://ms-perspektive.com/75-edss The Expanded Disability Status Scale (EDSS) is a key tool used by neurologists to measure how Multiple Sclerosis (MS) affects your body. Understanding the EDSS can help you gain insight into your condition and assist in making informed decisions about your treatment. In this article, I’ll simplify the EDSS, explaining how it assesses eight key functions, from reflexes and balance to vision and mental health. Whether you’re new to MS or have been managing it for years, this guide will help you navigate the EDSS and its role in your care. Keep reading to learn more. Table of Contents Understanding the EDSS Assessment EDSS Scoring EDSS Explained Clearly In-depth explanation of the EDSS If you want to read more in-depth information, I recommend checking out the following pages: Article about EDSS on MS Trust Article about EDSS on MS Society --- See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.…

MS-Perspektive - The Multiple Sclerosis Podcast

1
#074: S1P Modulators - Fingolimod (Gilenya), Ozanimod (Zeposia), Ponesimod (Ponvory), Siponimod (Mayzent) for active RRMS & SPMS 31:10

hace 37 weeks31:10

31:10

Learn more about the S1P Modulators, known by the brand names Gilenya, Zeposia, Ponvory, Mayzent and their usage against active RRMS & SPMS. You can find the complete text to read on my blog: https://ms-perspektive.com/074-s1p-modulators Today it’s all about the group of S1P modulators, which includes fingolimod (Gilenya), ozanimod (Zeposia), ponesimod (Ponvory) and siponimod (Mayzent). The first three, i.e. Gilenya, Zeposia and Ponvory, are used as a disease-modifying therapy for active multiple sclerosis. Fingolimod (Gilenya) is even approved for pediatric MS. Mayzent is approved for active SPMS if the patient is already experiencing a worsening of MS independent of relapses, but also has localized inflammatory activity. S1P modulators are pronounced sphingosine 1-phosphate receptor modulators and prevent the leakage of lymphocytes from the lymph nodes. This also prevents them from entering the central nervous system (CNS). The S1P receptor subgroups determine the side effect profile. Please remember that I can only provide an overview here. Your neurologist and your MS nurse should advise you in detail on the right therapy for you. This is because they know your general state of health and you should also talk about your goals, wishes, fears and preferences so that these can be taken into account. Table of Contents General Information How are S1P Modulators – Fingolimod (Gilenya), Ozanimod (Zeposia), Ponesimod (Ponvory), Siponimod (Mayzent) classified in immunotherapies? What are fingolimod (Gilenya), ozanimod (Zeposia), ponesimod (Ponvory), and siponimod (Mayzent) approved for? What is the situation for special patient groups? Who should avoid fingolimod (Gilenya), ozanimod (Zeposia), ponesimod (Ponvory), and siponimod (Mayzent)? How do fingolimod (Gilenya), ozanimod (Zeposia), ponesimod (Ponvory), and siponimod (Mayzent) work? How is it taken? How effective are fingolimod (Gilenya), ozanimod (Zeposia), ponesimod (Ponvory), and siponimod (Mayzent)? Risks and side effects of fingolimod (Gilenya), ozanimod (Zeposia), ponesimod (Ponvory), and siponimod (Mayzent) Vaccinations Sources Final note Sources I used the following sources to create the content: Lecture on S1P receptor modulator by Prof. Dr. Tobias Derfuss as part of the Multiple Sclerosis Management Master’s program Quality manual of the German KKNMS on fingolimod (Gilenya), ozanimod (Zeposia), ponesimod (Ponvory), and siponimod (Mayzent) MS-Selfie Infocards by Prof. Dr. Gavin Giovannoni German Multiple Sclerosis and Fertility Registry (DMSKW) Information from the German interview with Prof. Dr. Barbara Kornek on pediatric MS German DECIMS information on fingolimod Final note Please remember, there is no one great medication that helps everyone, but it must always be weighed up what suits a particular person best. Other illnesses, personal goals and preferences must also be taken into account. Your neurologist and MS nurse are the right persons to talk to and can make individual recommendations. This article is for information purposes only and does not constitute a recommendation. What helps one person may not help another. I hope that, together with your neurologist and MS nurse, you will quickly find the right immunotherapy for you. And that you can lead a fulfilled, happy and self-determined life with MS, supported by a healthy lifestyle and a dose of fortune. --- You may also want to look at the posts on the other DMTs: #061: Dimethyl fumarate (Tecfidera) and diroximel fumarate (Vumerity) #065: Glatiramer acetate (Copaxone, Brabio) #068: Interferon-beta (Avonex, Betaferon, Extavia, Plegridy, Rebif) #070: Teriflunomide (Aubagio) #072: Natalizumab (Tysabri, Tyruko) for active relapsing remitting MS See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.…

MS-Perspektive - The Multiple Sclerosis Podcast

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#073: “Haciendo Lo Invisible, Visible”. Crys's Journey of Invisible Battles and Visible Triumphs as Latina with MS in the US 52:57

hace 38 weeks52:57

52:57

Crys was diagnosed with MS at the age of 11. She talks about her experiences as a first-generation Latina and her mission on social media. You can find all questions and answers on my blog: https://ms-perspektive.com/073-crys Today I’m talking to Crys about her life with multiple sclerosis as a first generation Latina. Crys was diagnosed at age eleven and experienced her most severe episode at age 13 when she was paralyzed from the neck down. She recovered from this episode thanks to the devoted support of her family, especially her mother. Nevertheless, to this day it remains a great challenge to have information about the disease, its symptoms and treatment options available in Spanish. To help children, adolescents and young adults in similar situations feel better than she did, Crys explains her life and the daily challenges of living with a chronic illness with a zest for life. Table of Contents Introduction – Who is Crystal Bedoya? Diagnosis and status Invisible Battles with MS Visible Triumphs with MS Wishes and goals Quickfire Q&A Session Farewell Introduction – Who is Crystal Bedoya? Crystal is a disabled creator and writer from the warm and sunny state of Arizona, USA. Despite her early MS diagnosis at age 11, she loves traveling and exploring new countries, tracking down cute coffee shops with the best matcha, reading, staying active, going to concerts, and spending time with her loved ones. Through her social media platforms, Crystal shares relatable content for people with chronic illnesses and helps educate others about living with MS as a young first-generation Latina. How and where can interested people find you online? I am on various platforms that include Instagram , TikTok , Threads , Twitter , Facebook , and YouTube as @CrystalBedoya Is there anything else you would like to share with the listeners? I’m always here for support, I love connecting with more MS friends online, so don’t be afraid to send me a message. I’m here to chat, answer questions, and be as supportive as I can be. --- Thank you so much, Crys, for sharing your journey so far and creating content for people who are in a similar situation to you in one way or another. I hope life has many beautiful things in storefor you and rewards your strength with wonderful people and experiences. See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.…

MS-Perspektive - The Multiple Sclerosis Podcast

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#072: Natalizumab (Tysabri, Tyruko) for active relapsing remitting MS 22:13

hace 39 weeks22:13

22:13

Natalizumab (Tysabri, Tyruko) is approved as disease-modifying therapy (DMT) for active RRMS with a rapidly evolving severe MS. You can read the complete article on my blog: https://ms-perspektive.com/072-natalizumab Today we are talking about natalizumab, which is known under the trade names Tysabri and Tyruko. The immunotherapy is used for active, severe courses of relapsing forms of MS. Natalizumab is a migration-inhibiting drug that prevents the migration of T and B cells into the central nervous system. Please remember that I can only provide an overview here. Your neurologist and your MS nurse should give you detailed advice on choosing the right therapy for you. This is because they know your overall state of health and you should also talk about your goals, wishes, fears and preferences so that these can be taken into account. Table of Contents General Information How is natalizumab (Tysabri, Tyruko) classified in immunotherapies? What is natalizumab (Tysabri, Tyruko) approved for? What is the situation for special patient groups? Who should avoid natalizumab? How does natalizumab works? How is it taken? How effective is natalizumab (Tysabri, Tyruko)? Risks and side effects of natalizumab (Tysabri, Tyruko) Vaccinations Sources Final note Sources I used the following sources to create the content: Lecture on Natalizumab by Prof. Dr. Thomas Berger as part of the Multiple Sclerosis Management Master’s program Quality manual of the German KKNMS on natalizumab (Tysabri, Tyruko) MS-Selfie Infocards by Prof. Dr. Gavin Giovannoni German Multiple Sclerosis and Fertility Registry (DMSKW) Information from the German interview with Prof. Dr. Barbara Kornek on pediatric MS German DECIMS information on natalizumab Final note Please remember, there is no one great medication that helps everyone, but it must always be weighed up what suits a particular person best. Other illnesses, personal goals and preferences must also be taken into account. Your neurologist and MS nurse are the right persons to talk to and can make individual recommendations. This article is for information purposes only and does not constitute a recommendation. What helps one person may not help another. I hope that, together with your neurologist and MS nurse, you will quickly find the right immunotherapy for you. And that you can lead a fulfilled, happy and self-determined life with MS, supported by a healthy lifestyle and a dose of fortune. --- You may also want to listen to the episodes on the other DMTs: #061: Dimethyl fumarate (Tecfidera) and diroximel fumarate (Vumerity) #065: Glatiramer acetate (Copaxone, Brabio) #068: Interferon-beta (Avonex, Betaferon, Extavia, Plegridy, Rebif) #070: Teriflunomide (Aubagio) See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.…

MS-Perspektive - The Multiple Sclerosis Podcast

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#071: Insights into MS treatment in Colombia with neurologist Dr. Adriana Casallas Vanegas 41:39

hace 40 weeks41:39

41:39

Dr. Adriana Casallas V. provides insights into the treatment and care of MS patients in Colombia including improvements and challenges. You can find all questions and answers to read through on my blog: https://ms-perspektive.com/71-adriana-casallas MS has long been known as an orphan disease in Colombia, but the increasing number of newly diagnosed patients is changing this picture. Dr. Adriana Casallas Vanegas is an MS specialist who is committed to providing the best possible care for people with MS. She studies multiple sclerosis management at the European Charcot Foundation and is a Fellow of the organization. Patients living with NMOSD or MOGAD also benefit from her fascination with demyelinating diseases. In the interview, Adriana provides insights into the Colombian healthcare system and contact points where those affected can find support. Table of Contents Introduction – Who is Dr. Adriana Casallas Vanegas? Prevalence and Awareness of MS in Colombia Quality of Life for MS Patients in Colombia Access to Treatment and Support Services Social Support and Coping Mechanisms Multiple Sclerosis Management Master program Gender disparities in multiple sclerosis research and leadership Quickfire Q&A Session Farewell Introduction – Who is Dr. Adriana Casallas Vanegas? I am a neurologist specializing in demyelinating diseases. I spent some time studying in Spain and Mexico to prepare myself in the best way for patients. I am currently finishing my master’s degree in multiple sclerosis at the European Charcot Foundation, and soon I will go to Cemcat with the ECTRIMS scholarship. I am from Colombia and live an hour away from Bogotá, the capital of Colombia. I have 2 dogs named Bubba and Tango. I enjoy spending time with them, walking in nature, biking, and playing tennis. I come from a loving family that is always surrounded by many animals. I have a cheerful personality and I am always eager to learn new things and explore different trades. I am also very curious about technology, music, and literature. Finally, what message of hope or encouragement would you like to share with the listeners? I want to express my deep gratitude to Colombian patients. Their invaluable contribution is pivotal for the advancement of treatments, knowledge, and strategies aimed at improving comprehensive management. Their unwavering strength and patience are fundamental to our progress. I want to emphasize that they are not alone, and together, we can achieve remarkable results. Lastly, I want to instill a message of hope; although the journey is long, we are committed to triumphing hand in hand. How and where can interested people follow your research activities? You can follow my Instagram dracasallasneurologia . Also, you can find research and MS activities at X platform acv_adri. --- Many thanks to Adriana for all her commitment and efforts to improve the lives of people with MS in Colombia. See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.…

MS-Perspektive - The Multiple Sclerosis Podcast

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#070: Teriflunomide (Aubagio) for relapsing remitting MS 19:06

hace 41 weeks19:06

19:06

Teriflunomide (Aubagio) is approved as disease-modifying therapy for mild to moderate RRMS from 10 years of age. You can find the full article to read on my blog: https://ms-perspektive.com/70-teriflunomide This time it’s about teriflunomide, which is known under the trade name Aubagio. The immunotherapy is used for mild to moderate courses of relapsing forms of MS. Teriflunomide also has a broader mechanism of action and is one of the immunomodulating drugs. Please remember that I can only provide an overview here. Ask your neurologist and MS nurse for detailed advice on choosing the right therapy for you. They should know your complete state of health and be aware of your goals, wishes, fears and preferences. Table of Contents General Information How is teriflunomide (Aubagio and generics) classified in immunotherapies? What is teriflunomide (Aubagio) approved for? What is the situation for special patient groups? Who should avoid teriflunomide? How does teriflunomide works? How is it taken? How effective is teriflunomide (Aubagio and generics)? Risks and side effects of teriflunomide (Aubagio and generics) Vaccinations Sources Final note Sources I used the following sources to create the content: Quality manual of the KKNMS on teriflunomide (Aubagio) MS-Selfie Infocards by Prof. Dr. Gavin Giovannoni German Multiple Sclerosis and Fertility Registry (DMSKW) Information from the German interview with Prof. Dr. Barbara Kornek on pediatric MS DMSG information on teriflunomide DECIMS information on teriflunomide Final note Please remember, there is no one great medication that helps everyone, but it must always be weighed up what suits a particular person best. Other illnesses, personal goals and preferences must also be taken into account. Your neurologist and MS nurse are the right persons to talk to and can make individual recommendations. This article is for information purposes only and does not constitute a recommendation. What helps one person may not help another. I hope that, together with your neurologist and MS nurse, you will quickly find the right immunotherapy for you. And that you can lead a fulfilled, happy and self-determined life with MS, supported by a healthy lifestyle and a dose of fortune. --- You may also want to look at the posts on the other DMTs: Dimethyl fumarate (Tecfidera) and diroximel fumarate (Vumerity) Glatiramer acetate (Copaxone, Brabio) Interferon-beta (Avonex, Betaferon, Extavia, Plegridy, Rebif) See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.…

MS-Perspektive - The Multiple Sclerosis Podcast

1
#069: Beyond Boundaries. Advocacy, Research, and Recognition in MS with Rachel Horne 1:00:18

hace 42 weeks1:00:18

1:00:18

MS patient and advocate Rachel Horne sponsors a prize for women in MS research and campaigns for more diversity in clinical trials. You can read all questions and answers on my blog: https://ms-perspektive.com/69-rachel-horne Rachel Horne was diagnosed with multiple sclerosis at the age of 43, when she felt fit and healthy. She established the Rachel Horne Award to raise the visibility of women in MS research. The selection is made by a number of volunteers from International Women in MS according to clear criteria. Rachel also advocates for a more diverse group of study participants in clinical trials. This could help to find the right treatment for each individual MS patient, regardless of age, gender, ethnicity or co-morbidities. The greater the diversity of the study population, the better it is possible to assess effects and find out who benefits most and who does not. Table of Contents Introduction - Who is Rachel Horne? Personal Experiences and Coping Strategies Rachel Horne Prize for Women's Research in MS Exploring the Influence of Gender and Ethnicity Patient Advocate Activities Quickfire Q&A Session Farewell Introduction - Who is Rachel Horne? My name is Rachel. I was born in Canada and have lived in the UK for more than 30 years. I was diagnosed with MS in 2009 – about 15 years ago. I am married and have two adult children. Hobbies – I have to say reading! Finally, what message of hope or encouragement would you like to share with individuals living with MS? I think it is so easy to forget that treatment into MS is a neurological success story. We now have over 20 drugs to treat our disease. People are living longer, better lives with the disease. The days of ‘diagnose and adios” are gone… though I am aware there are many countries in the world where this is not so. How and where can interested people find you online? I am on X (formerly Twitter): @RachelHorne19 --- Thanks to Rachel for all her efforts in making the world more diverse and balanced, See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.…

MS-Perspektive - The Multiple Sclerosis Podcast

1
#068: Interferon-beta (Avonex, Betaferon, Extavia, Plegridy, Rebif, …) for CIS, RRMS & SPMS 21:52

hace 43 weeks21:52

21:52

Interferon-beta (Avonex, Betaferon, Extavia, Plegrid,y Rebif) is used as a disease-modifying therapy for mild to moderate RRMS, CIS & SPMS. You can find the full article to read on my blog: https://ms-perspektive.com/068-interferons In today’s article, I present interferon-beta, which include several active substances and are known as Avonex, Betaferon, Extavia, Plegridy, Rebif, or under other trade names. They are all approved disease-modifying drugs for relapsing forms of MS. They are used for mild and moderate courses of the disease. Like glatiramer acetate and fumarates, which have already been presented, interferons have a broader mechanism of action. In the following, I will try to provide a good overview without delving into all the details. And as always: seek advice from MS specialists who know your individual situation, your wishes, your fears and your general state of health. Table of Contents General Information How are interferon-beta (Avonex, Betaferon, Extavia, Plegridy, Rebif, and generics) classified in immunotherapies? What is interferon-beta approved for? What is the situation for special patient groups? Who should avoid interferon-beta? How does interferon-beta works? How is it taken? How effective is interferon-beta (Avonex, Betaferon, Extavia, Plegridy, Rebif, and generics)? Risks and side effects of interferon-beta (Avonex, Betaferon, Extavia, Plegridy, Rebif and generics) Vaccinations Sources Final note Sources I used the following sources to create the content: Quality manual of the KKNMS on interferon-beta MS-Selfie Infocards by Prof. Dr. Gavin Giovannoni German Multiple Sclerosis and Fertility Registry (DMSKW) Information from the German interview with Prof. Dr. Barbara Kornek on pediatric MS DMSG information on interferon-beta DECIMS information on interferon-beta Final note Please remember, there is no one great medication that helps everyone, but it must always be weighed up what suits a particular person best. Other illnesses, personal goals and preferences must also be taken into account. Your neurologist and MS nurse are the right persons to talk to and can make individual recommendations. This article is for information purposes only and does not constitute a recommendation. What helps one person may not help another. I hope that, together with your neurologist and MS nurse, you will quickly find the right immunotherapy for you. And that you can lead a fulfilled, happy and self-determined life with MS, supported by a healthy lifestyle and a dose of fortune. --- You may also want to look at the posts on the other DMTs: Dimethyl fumarate (Tecfidera) and diroximel fumarate (Vumerity) Glatiramer acetate (Copaxone, Brabio) See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.…

MS-Perspektive - The Multiple Sclerosis Podcast

1
#067: MS Speech Therapy Insights. Enhancing Communication and Swallowing 16:19

hace 44 weeks16:19