MS-Perspektive International

In the MS-Perspektive International Podcast, I share my perspective on multiple sclerosis and how you can make the best of your diagnosis. Because a beautiful and fulfilling life is also possible with a chronic autoimmune disease like multiple sclerosis. Here you will find information and strategies on how you can actively influence your life. I want to encourage you and show you what you can do yourself. For this purpose, I publish solo articles with my experiences on basic therapy, nutrition, traveling, working and family planning. In addition, I interview experts on a variety of topics related to living with MS as well as other patients living with the disease.

#111: Pregnancy, childbirth, and breastfeeding with multiple sclerosis—my personal experiences 04/30/2025

#110: 10 things you should know about MRI scans for MS 04/23/2025

#109: Understanding Cognitive Reserve and Its Role in Multiple Sclerosis 04/16/2025

#109: Understanding Cognitive Reserve and Its Role in Multiple Sclerosis 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: 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 You can also complete the CRIq conveniently online through the official platform: . 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 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 Click here for an /episode/index/show/57b3fd31-0692-417f-a1e7-997041db4bcd/id/36160005

#108: How you can use ChatGPT (or another AI) to prepare for the doctor’s consultation 04/09/2025

#107: LGBTQ+ and MS: The Fight for Inclusive and Equitable Care with Dr. William Conte 04/02/2025

#107: LGBTQ+ and MS: The Fight for Inclusive and Equitable Care with Dr. William Conte 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: 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 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 or on 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 Click here for an /episode/index/show/57b3fd31-0692-417f-a1e7-997041db4bcd/id/35966875

#106: Trigeminal neuralgia and MS – an invisible challenge. Interview with Dr. Monika Köchling 03/26/2025

#105: The Sumaira Foundation & NMO: How One Woman’s Journey is Changing Lives Worldwide 03/19/2025

#105: The Sumaira Foundation & NMO: How One Woman’s Journey is Changing Lives Worldwide 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: 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? 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 . 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: , , , , , , and 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 Click here for an /episode/index/show/57b3fd31-0692-417f-a1e7-997041db4bcd/id/35734175

#104: Leveraging AI in MS Care and Shared Decision-Making with Dr. Stefan Ebener 03/12/2025

#104: Leveraging AI in MS Care and Shared Decision-Making with Dr. Stefan Ebener 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: 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? 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 Click here for an /episode/index/show/57b3fd31-0692-417f-a1e7-997041db4bcd/id/35644490

#103: Can epigenetic research transform MS treatment? Insights into DNA methylation and MS progression with Dr. Majid Pahlevan Kakhki 03/05/2025

#103: Can epigenetic research transform MS treatment? Insights into DNA methylation and MS progression with Dr. Majid Pahlevan Kakhki 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: 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? 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 () and also the Karolinska Institute () 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 Click here for an /episode/index/show/57b3fd31-0692-417f-a1e7-997041db4bcd/id/35525215

#102: MS and domestic violence and abuse (DVA). Raising awareness, offering support, creating change with Sue Britt 02/26/2025

#102: MS and domestic violence and abuse (DVA). Raising awareness, offering support, creating change with Sue Britt 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: 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? 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 Click here for an /episode/index/show/57b3fd31-0692-417f-a1e7-997041db4bcd/id/35370405

#101: Shared Decision Making and AI: Making the best decisions for MS together with Dr. Sven Jungmann 02/19/2025

#101: Shared Decision Making and AI: Making the best decisions for MS together with Dr. Sven Jungmann 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: 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? 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 , where I regularly share updates and insights. I’m also planning to get more active on with short talks and interviews about the intersection of healthcare, AI, and entrepreneurship. And my company’s new website will go live soon: --- 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 Click here for an /episode/index/show/57b3fd31-0692-417f-a1e7-997041db4bcd/id/35276370

#100: The Future of MS Care. Can Digital Twins Predict Your Disease Progression? With Prof. Tjalf Ziemssen 02/12/2025

#100: The Future of MS Care. Can Digital Twins Predict Your Disease Progression? With Prof. Tjalf Ziemssen 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: 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 Where can interested listeners follow your research or get involved? Prof. Tjalf Ziemssen: You can follow my work through , 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 Click here for an /episode/index/show/57b3fd31-0692-417f-a1e7-997041db4bcd/id/35243770

#099: Insights from Groundbreaking MS Studies on Risks, Trends, and Equity an ECTRIMS Special 02/05/2025

#098: New Research for Managing Primary Progressive Multiple Sclerosis (PPMS) an ECTRIMS Special 01/29/2025

#098: New Research for Managing Primary Progressive Multiple Sclerosis (PPMS) an ECTRIMS Special 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: 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 --- 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 Click here for an /episode/index/show/57b3fd31-0692-417f-a1e7-997041db4bcd/id/35037525

#097: Late-Onset Multiple Sclerosis (LOMS): Symptoms, treatment options, and prognosis with Dr. Abdulkadir Tunc 01/22/2025

#097: Late-Onset Multiple Sclerosis (LOMS): Symptoms, treatment options, and prognosis with Dr. Abdulkadir Tunc 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: 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? 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 or , where I share my latest publications and projects. I also collaborate with the 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 Click here for an /episode/index/show/57b3fd31-0692-417f-a1e7-997041db4bcd/id/34930365

#096: From Fatigue to Focus. The Power of Sleep and Exercise in Managing MS an ECTRIMS Special 01/15/2025

#095: Hidden Challenges – Exploring Smoldering MS with Prof. Gavin Giovannoni 01/08/2025

#095: Hidden Challenges – Exploring Smoldering MS with Prof. Gavin Giovannoni 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: 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? 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 . 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 Click here for an /episode/index/show/57b3fd31-0692-417f-a1e7-997041db4bcd/id/34702085

#094: Effects of the Mediterranean diet on MS an ECTRIMS Special 01/01/2025

#093: Aging with MS an ECTRIMS Special 12/25/2024

#092: Empowering the MS Community: Advocacy, Diversity, and Inclusion with patient expert Roxy Murray 12/18/2024

#092: Empowering the MS Community: Advocacy, Diversity, and Inclusion with patient expert Roxy Murray 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: 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? 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 . 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 Click here for an /episode/index/show/57b3fd31-0692-417f-a1e7-997041db4bcd/id/34476380

#091: New treatment strategies in MS an ECTRIMS Special 12/11/2024

#090: Empowering the black MS community – advocacy, awareness, and support with Natalie Diana Busari 12/04/2024

#090: Empowering the black MS community – advocacy, awareness, and support with Natalie Diana Busari 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: 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? 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! --- 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 Click here for an /episode/index/show/57b3fd31-0692-417f-a1e7-997041db4bcd/id/34255490

#089: Understanding the Hidden Challenges of MS: Sexual, Bladder, and Bowel Health an ECTRIMS Special 11/27/2024

#088: Immune Tolerance and MS. How the RED4MS Study Could Change MS Treatment with Dr. Andreas Lutterotti 11/20/2024

#088: Immune Tolerance and MS. How the RED4MS Study Could Change MS Treatment with Dr. Andreas Lutterotti 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: 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? 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? (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 Click here for an /episode/index/show/57b3fd31-0692-417f-a1e7-997041db4bcd/id/33985967

#087: Understanding and managing Neuromyelitis Optica (NMOSD). Latest Advances in treatment with Dr. Luis Alfonso Zarco 11/13/2024

#087: Understanding and managing Neuromyelitis Optica (NMOSD). Latest Advances in treatment with Dr. Luis Alfonso Zarco 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: 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? 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 . --- 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 Click here for an /episode/index/show/57b3fd31-0692-417f-a1e7-997041db4bcd/id/33695207

#086: Navigating Menopause with MS – Key insights on symptom progression, aging, and personalized care (ECTRIMS Special) 11/06/2024

#086: Navigating Menopause with MS – Key insights on symptom progression, aging, and personalized care (ECTRIMS Special) 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: 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 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 Click here for an /episode/index/show/57b3fd31-0692-417f-a1e7-997041db4bcd/id/33794227

#085: ECTRIMS Special on innovative MS rehabilitation for better quality of life 10/30/2024

084: Vascular dysfunction and Multiple Sclerosis. How Your vessels Could Shape Your MS Journey with Dr. Jonathan Pansieri 10/23/2024

084: Vascular dysfunction and Multiple Sclerosis. How Your vessels Could Shape Your MS Journey with Dr. Jonathan Pansieri 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: 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? 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 ( and ), where I share insights and updates (though I wish I could share more!). Additionally, you can connect with me on ResearchGate () and LinkedIn (/), 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 Click here for an /episode/index/show/57b3fd31-0692-417f-a1e7-997041db4bcd/id/33523672

#083: ECTRIMS Special on De-escalation and discontinuation of therapies for MS – What does it mean and how can it work? 10/16/2024

#082: Living with neuromyelitis optica (NMO) in Denmark with Leda Bresnov 10/09/2024

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