MS-Perspektive - The Multiple Sclerosis Podcast

Nele von Horsten
  • 5.0 (1)
  • Health & Fitness
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In the MS-Perspektive Podcast, I present my view of multiple sclerosis and show you how you can make the best of the diagnosis. Because a beautiful and fulfilling life is also possible with multiple sclerosis. Here you will find information and strategies on how you can actively influence your course. In addition, I publish solo articles with my experiences, interview experts and on various topics related to living with MS as well as other affected people. In addition, there are a few episodes that serve the relaxation, positive attitude and stimulation.

  1. 3d ago

    Progressive MS Research: Milestones, Setbacks and Hope with Tim Coetzee

    Progressive MS research has made important advances, but many questions about disability progression, biomarkers, treatment, and quality of life remain unanswered. In this episode, I speak with Tim Coetzee, President and CEO of the National MS Society in the United States and Chair of the Executive Committee of the International Progressive MS Alliance. Tim explains why the Alliance was created and how MS organizations, scientists, clinicians, industry partners, and people affected by MS are working together instead of conducting research in isolation. We talk about the changing understanding of multiple sclerosis as a continuum, the biological mechanisms behind progression, and the search for reliable biomarkers. Tim also shares examples of new clinical-trial approaches and explains why studies need to include people who better represent the real-world MS community. You will also learn how medication, rehabilitation, symptom management, lifestyle, and social support can contribute to quality of life while researchers continue working toward treatments that slow, prevent, or reverse progression. Despite setbacks, Tim's message is encouraging: progress is happening every day, and the global MS community remains committed to finding effective solutions for people living with progressive MS. In This Episode, We Discuss Why the International Progressive MS Alliance was founded The difference between relapsing-remitting, secondary progressive, and primary progressive MS Why MS is increasingly understood as a biological continuum Important milestones in progressive MS research The Alliance's collaborative research networks The search for biomarkers that can predict progression How clinical trials for progressive MS are changing The influence of comorbidities on progression and research The importance of rehabilitation and symptom management Current research into fatigue, pain, cognition, and mobility What people living with progressive MS can realistically hope for today The Alliance's priorities for the coming years About Tim Coetzee Tim Coetzee is President and CEO of the National MS Society in the United States and Chair of the Executive Committee of the International Progressive MS Alliance. His work focuses on accelerating research, improving access to treatment and support, and helping people affected by MS live their best possible lives. Resources Blog article with the written interview: https://ms-perspektive.com/176-progressive-ms/ International Progressive MS Alliance National Multiple Sclerosis Society International Progressive MS Alliance on LinkedIn International Progressive MS Alliance Newsletter Tim Coetzee on LinkedIn Tim Coetzee on PubMed What would you like to leave our listeners with — especially those living with progressive MS or fearing progression? Tim Coetzee: There is progress happening every day, and there are researchers and organizations and people all over the world working hard to find treatments and therapies. We know this work is important and we are not finished until we have solved progressive 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.

  2. Jul 15

    Multiple Sclerosis and Pain. How Exercise and Physical Activity Can Help

    Pain is one of the most common and life-impacting symptoms in multiple sclerosis. In this episode, Nele talks with Rasmus Christian Jungersen, PhD student at the Department of Exercise Biology at Aarhus University in Denmark, about the different types of MS pain and how exercise and physical activity may help. Rasmus explains the difference between neuropathic pain, nociceptive pain, spasticity-related pain, headaches, and mixed pain types. He also challenges one of the most common myths: chronic pain does not automatically mean ongoing tissue damage, and carefully adapted movement does not usually make pain worse in the long term. The conversation offers realistic, hopeful guidance for people with MS who want to move more, reduce fear of exercise, and improve quality of life despite pain. Read the full blog article here: https://ms-perspektive.com/175-rasmus/ What to expect in this episode Why pain is so common in multiple sclerosis The difference between neuropathic, nociceptive, musculoskeletal, and spasticity-related pain Why many people with MS experience more than one type of pain What central sensitization, neuroinflammation, and pain interference mean Why pain intensity is not the same as the impact pain has on daily life How exercise may help reduce pain biologically and psychologically Why light to moderate activity can already be helpful Why the best exercise is often the one you can sustain How to start safely and build up gradually Why temporary pain increase during or after exercise is not always a danger signal How exercise can be adapted for mobility limitations or disability Why a holistic approach to pain management is important What the EXpain project aims to investigate Scientific background mentioned in the article The blog article includes further reading on: Mechanism-based classification of pain in MS, including trigeminal neuralgia, Lhermitte's phenomenon, spasticity pain, musculoskeletal pain, migraine, and treatment-induced pain Pain types and lived experiences in people with MS, including dysesthetic extremity pain and spasticity-associated pain Exercise interventions for pain reduction in people with MS Possible mechanisms of exercise in chronic pain, including inflammation, oxidative stress, neuroplasticity, and descending pain modulation Exercise as a treatment option for chronic musculoskeletal pain The EXpain project, Rasmus' current research on exercise as a non-pharmacological pain treatment in MS Previous related episode: Holistic approach for pain management  Contact Rasmus C. Jungersen on PubMed LinkedIn profile --- 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.

  3. Jul 8

    MS Treatment Access in Australia. Deanna and Rachel on Living with Multiple Sclerosis, Advocacy, and the Future of Ocrevus, Kesimpta & Briumvi

    Deanna Renee and Rachel Kerr speak about living with multiple sclerosis in Australia, the importance of lived experience in policy, and the current uncertainty around PBS access to Ocrevus and Kesimpta. Both were diagnosed with MS at 17 and have tried several treatments before finding options that work for them. They explain why treatment decisions should remain between people with MS and their neurologists, and why cost-driven switching can create fear and instability. Deanna also shares how her Community Advocacy Kit helps people speak up, even with limited energy. You can read the interview here: https://ms-perspektive.de/174-deanna/ Topics covered: Being diagnosed with MS as a teenager Why lived experience belongs in policy decisions PBS access, Ocrevus, Kesimpta and Briumvi Medication fear and treatment switching Low-spoons advocacy and community action Hope, realism and the future of MS research Resources mentioned: MS Australia: Your Voice Your Story Deanna Renee @circularblooms on Instagram, TikTok and Facebook Community Advocacy Kit via Deanna's bio and show notes Rachel, if a listener takes only one action after hearing this episode — for themselves or someone they love — what would you hope it is? Do one thing that helps your voice be heard. That could be writing to a minister, contacting your local representative, sharing an advocacy post, or encouraging someone else to speak up. And if you are not living with MS yourself, your voice still matters. Family members, partners, friends and colleagues can also help show decision-makers that treatment access affects whole communities, not only individuals. --- This episode is a reminder that lived experience is expertise. And when people with MS speak together, their voices can become impossible to ignore. 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.

  4. Jul 1

    Immunoadsorption for MS Relapses. Interview with senior physician Anna-Katharina Eser

    In this episode, I speak with Anna-Katharina Eser, senior physician at the MS Centre in Mainkofen, Germany, about immunoadsorption in multiple sclerosis. Immunoadsorption is a specialized blood purification procedure that may be used when an acute MS relapse does not improve sufficiently after high-dose corticosteroid treatment. Anna-Katharina Eser explains how the procedure works, why certain antibodies are filtered from the blood, how long treatment can take and which side effects may occur. She also discusses the difference between immunoadsorption and plasmapheresis, why corticosteroids are usually tried first, and why MS is not a dead end. This interview was originally published in August 2021 on the German MS-Perspektive podcast and has been translated and adapted for an international audience. Availability, clinical use and reimbursement may vary depending on your country and healthcare system. Topics covered: When immunoadsorption may be used in MS How "blood washing" works Possible side effects and treatment duration Difference between immunoadsorption and plasmapheresis Why corticosteroids are usually the first step Encouraging perspectives on life with MS Helpful international resources: National Multiple Sclerosis Society: https://www.nationalmssociety.org/ MS International Federation (MSIF): https://www.msif.org/ Multiple Sclerosis Society UK: https://www.mssociety.org.uk/ PubMed search for Anna-Katharina Eser: https://pubmed.ncbi.nlm.nih.gov/?term=Eser+AK&cauthor_id=41994667 PubMed: Immunoadsorption and multiple sclerosis: https://pubmed.ncbi.nlm.nih.gov/?term=Immunoadsorption+%2B+multiple+sclerosis Is there anything you would like to share with the listeners? Anna-Katharina Eser: Every person with MS should know that the diagnosis is not a dead end. I like the spirit of a quote often attributed to Albert Einstein: We all have difficult things to carry, because this is inseparable from life. But one thing helps: to stand together in friendship and help carry one another. --- Many thanks to senior physician Anna-Katharina Eser for this interview and for explaining immunoadsorption in such a clear and encouraging way. 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.

  5. Jun 24

    AI for MS. How the CLAIMS Project Could Transform MS Care – with Prof. Friedemann Paul

    In this episode, Prof. Friedemann Paul from Charité – Universitätsmedizin Berlin, Germany, explains how the European CLAIMS project aims to improve multiple sclerosis care through AI-assisted decision support. CLAIMS brings together MRI, OCT, blood biomarkers such as neurofilament light chain, clinical data and patient-reported outcomes to support more precise predictions of MS progression. This episode is supported by the European Charcot Foundation. We talk about precision medicine, RAW and PIRA progression, trust in AI, clinical validation, access, reimbursement and what it takes to bring such a tool into everyday neurological care. A key message of the episode: AI should support neurologists and shared decision making — not replace them. You can find the written interview here: https://ms-perspektive.de/172-claims/ Topics covered What CLAIMS aims to achieve for people with MS Why precision medicine matters in multiple sclerosis How MRI, OCT, biomarkers and patient-reported outcomes can be integrated RAW and PIRA progression explained Why AI will not replace neurologists How trust, transparency and data quality influence AI-supported care Validation, approval, reimbursement and implementation in daily practice How people with MS and clinicians can stay updated or get involved Resources mentioned CLAIMS project: https://www.claims.ms/ PROCLAIM study: https://www.claims.ms/proclaim/ European Charcot Foundation – CLAIMS initiative: https://www.charcot-ms.org/initiatives/claims-clinical-impact-through-ai-assisted-ms-care RECLAIM study protocol: https://www.frontiersin.org/journals/neurology/articles/10.3389/fneur.2025.1557947/full PROCLAIM study: https://clinicaltrials.gov/study/NCT07032246 icometrix / icobrain ms: https://www.icometrix.com/multiple-sclerosis What message would you like to leave with our listeners today? Prof. Friedemann Paul: There is hope for better management of the disease. We desperately need this because more and more people are being diagnosed with multiple sclerosis. And we need more and better data. If you have time and resources, please consider contributing to research. This could be an observational study, a therapeutic trial, a study on lifestyle or another local research project. It is really important. We can only improve outcomes in multiple sclerosis if we do more research. --- 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.

  6. Jun 17

    The Gut-Brain Axis in Multiple Sclerosis. Interview with Prof. Dr. Anne-Katrin Pröbstel

    The gut–brain axis in multiple sclerosis is an exciting field of research that connects the gut microbiome, immune system and central nervous system. In this interview, Prof. Dr. Anne-Katrin Pröbstel explains how B cells, especially IgA-producing B cells, may influence inflammation in MS and why not all immune cells are harmful. She also discusses what current research can and cannot yet tell us about diet, vitamin D, smoking and future treatment approaches. You can find the interview to read here: https://ms-perspektive.de/en/171-proebstel/ You'll learn: What the gut–brain axis means in multiple sclerosis. How B cells and IgA may be involved in MS. Why the gut microbiome is important for MS research. What role diet, fiber, vitamin D and smoking may play. Why much of this work is still basic research. How future therapies may become more targeted. Resources mentioned: www.proebstellab.com German Multiple Sclerosis Society Swiss Multiple Sclerosis Society National MS Society UKB NewsRoom - Bonn, Germany Is there anything you would like listeners to take away? Dr. Anne-Katrin Pröbstel: The audience is probably very diverse. Some listeners may live with MS themselves, others may be relatives, caregivers or professionals interested in the topic. What I would like to say is this: I have great respect for people living with MS and for the way they deal with this disease. At the same time, I believe that scientific progress can offer hope. Many physicians and researchers are working to better understand MS and to develop improved therapies. Progress is not always fast, but it is moving forward step by step. I would like to encourage people affected by MS to stay hopeful. --- 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.

  7. Jun 10

    Vaccinations and MS – What You Need to Know with Dr. Thomas Grüter

    In this episode, Nele talks with neurologist Dr. Thomas Grüter about vaccinations and multiple sclerosis. The original interview was published in German in December 2024. This English version has been translated and adapted for an international audience, because healthcare systems, vaccination schedules, reimbursement rules, and official recommendations differ from country to country. Dr. Grüter explains why infections can be more challenging for people with MS, how vaccinations may help reduce certain risks, and why timing is especially important when disease-modifying therapies are involved. He also discusses common myths, the difference between inactivated and live vaccines, and vaccination planning around pregnancy, breastfeeding, and MS treatment. Please always check the recommendations in your own country and discuss your personal vaccination plan with your healthcare professional team, including your neurologist. Topics covered in this episode: Why vaccinations matter for people with MS Common myths about vaccines and autoimmune diseases Inactivated vaccines versus live vaccines How MS therapies may influence vaccine response The best timing for vaccinations before or during MS treatment Vaccination planning around pregnancy and breastfeeding Where to find reliable vaccination information Resources mentioned: VAC-MAC project: https://www.vac-mac.de Blog article: https://ms-perspektive.com/170-vaccinations/ Please note: This podcast provides general information and encouragement. It does not replace medical advice. Vaccination recommendations may vary internationally, so please follow the guidance in your own country and speak with your healthcare team. Final message Dr. Thomas Grüter: Do not let myths discourage you. Vaccinations are one of the great achievements of modern medicine. They can provide effective protection against serious diseases. For people with MS, this protection can be especially important. Talk to your healthcare team, ask questions, and make informed decisions based on evidence rather than fear. --- 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.

  8. Jun 3

    Multiple Sclerosis in Nepal. Diagnosis, Treatment and Access to Care

    In this episode, Nele speaks with Dr. Ayush Chandra and Dr. Avinash Chandra about multiple sclerosis in Nepal. They explain why MS is still often diagnosed late, how limited access to MRI, neurologists and treatment affects people in rural and mountainous regions, and why awareness is so important for earlier diagnosis. The conversation also highlights the work of the Multiple Sclerosis Society of Nepal, advocacy for more affordable medication, and the hope for stronger international collaboration to improve MS care in low-resource settings. You can read through the interview here: https://ms-perspektive.com/169-ms-in-nepal Topics covered in this episode: Why MS has long been overlooked in Nepal How common MS appears to be and why reliable data is still limited Typical barriers to diagnosis, including MRI costs and lack of specialists Rural access challenges and the role of geography Treatment options in Nepal, including rituximab and adapted strategies The work and advocacy of the Multiple Sclerosis Society of Nepal Why awareness, education, telemedicine and local research matter Messages of hope for people with MS and their families Resources: Multiple Sclerosis Society of Nepal MS International Federation --- 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.

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In the MS-Perspektive Podcast, I present my view of multiple sclerosis and show you how you can make the best of the diagnosis. Because a beautiful and fulfilling life is also possible with multiple sclerosis. Here you will find information and strategies on how you can actively influence your course. In addition, I publish solo articles with my experiences, interview experts and on various topics related to living with MS as well as other affected people. In addition, there are a few episodes that serve the relaxation, positive attitude and stimulation.

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