MS-Perspektive - The Multiple Sclerosis Podcast

Nele von Horsten

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. 1D AGO

    Reclaiming Intimacy with MS: Practical Help for Sexual Dysfunction (Expert Interview with Dr. Markus Heibel)

    Sexuality is still a taboo topic for many people with multiple sclerosis (MS), even though sexual dysfunction is a common symptom of the disease. In this episode, I speak with neurologist Dr. Markus Heibel, medical director of a specialized MS clinic in Germany, about why sexual problems occur in MS—and what can help. We discuss the difference between primary, secondary, and tertiary sexual dysfunction, how symptoms like spasticity, pain, medication side effects, or psychological stress can affect intimacy, and which treatment options exist. Dr. Heibel also shares practical strategies from clinical practice—from physiotherapy and psychotherapy to communication within relationships and creative solutions that couples have found helpful. The conversation shows that fulfilling intimacy is still possible with MS—and that talking openly about the topic is often the first and most important step. 👉 Read the full interview and resources on the blog: https://ms-perspektive.com/156-dr-heibel Topics in this episode Why sexual dysfunction in MS is still a taboo topic Primary, secondary, and tertiary sexual dysfunction explained The role of medication, hormones, physiotherapy, and psychotherapy Practical strategies for couples living with MS Why communication and openness are key What people with MS can do themselves to improve intimacy Further resources on sexuality and multiple sclerosis Sexual health is an important part of overall wellbeing, but many people with multiple sclerosis (MS) still find it difficult to talk about intimacy, desire, and sexual dysfunction. Fortunately, several international MS organizations provide reliable information, practical advice, and educational materials about sexuality, relationships, and intimacy with MS. The following resources are good starting points if you would like to learn more or look for further support. Global resources MS International Federation (MSIF) – Relationships and intimacy Overview article on intimacy, relationships, and communication when living with MS. https://www.msif.org/living-with-ms/relationships-and-intimacy/ MS International Federation (MSIF) – Sexual problems Explains the different types of sexual dysfunction in MS (primary, secondary, tertiary) and common symptoms. https://www.msif.org/about-ms/symptoms-of-ms/sexual-problems/ MS International Federation (MSIF) – Sexuality and MS (resource guide) Educational resource covering topics such as body image, desire, intimacy, and coping strategies. https://www.msif.org/resource/sexuality-ms/ MS International Federation (MSIF) – Intimacy and Sexuality in MS (MS in Focus issue) A thematic publication with expert articles and patient perspectives on sexuality and MS. https://www.msif.org/resource/intimacy-and-sexuality-ms/ United States National Multiple Sclerosis Society – Sexual problems in MS Overview of sexual dysfunction in MS, including causes, treatment options, and communication tips for couples. https://www.nationalmssociety.org/understanding-ms/what-is-ms/ms-symptoms/sexual-problems National Multiple Sclerosis Society – Intimacy and MS Guidance on maintaining intimacy, emotional closeness, and communication in relationships affected by MS. https://www.nationalmssociety.org/managing-ms/living-with-ms/relationships/intimacy Multiple Sclerosis Association of America (MSAA) – Sexual dysfunction Practical information about sexual symptoms, contributing factors, and possible treatment approaches. https://mymsaa.org/ms-information/symptoms/sexual-dysfunction/ United Kingdom MS Society (UK) – Sex and relationships Comprehensive information on intimacy, sexual health, and relationship challenges for people living with MS. https://www.mssociety.org.uk/living-with-ms/physical-and-mental-health/sex-and-relationships MS Society (UK) – Sex and relationship problems Focused guidance on common sexual difficulties and possible ways to address them. https://www.mssociety.org.uk/living-with-ms/physical-and-mental-health/sex-and-relationships/sex-and-relationship-problems Canada MS Canada – Intimacy Resource page about emotional closeness, communication, and relationship changes when living with MS. https://mscanada.ca/intimacy MS Canada – Intimacy and sexuality Information about sexual function, body image, and maintaining a satisfying intimate life with MS. https://mscanada.ca/intimacy-and-sexuality Thank you to Dr. Markus Heibel for this relaxed conversation about "the best side topic in the world"—and for showing the many ways people with MS can rediscover pleasure, closeness, and joyful intimacy. 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.

    20 min
  2. FEB 25

    Genetic subtypes in MS. What they mean for your progression and treatment with Dr. Karim Kreft

    Why does multiple sclerosis progress very differently from person to person? And could your genes help predict your individual MS pathway in the future? In this episode of the MS Perspektive Podcast, I speak with neurologist and researcher Dr. Karim Kreft from the University of Nottingham about his groundbreaking work on genetic subtypes in MS. His research explores whether known MS risk genes may also influence long-term disease progression and response to treatment. Using genetic clustering methods, his team identified three distinct genetic groups of MS patients – with interesting differences in progression and treatment benefit. While this research is not yet ready for clinical use, it offers an exciting glimpse into the future of personalized medicine in MS. What You'll Learn in This Episode How much genetics actually contributes to MS risk What "genetic clustering" means in simple terms Why MS is such a heterogeneous disease The three identified genetic subtypes in MS Why one group benefited significantly more from treatment Whether mild MS patients benefit differently from medication The limitations of real-world data in MS research Why future MS care may move beyond clinical labels When genetic testing might become part of routine care About My Guest Dr. Karim Kreft is a consultant neurologist and Associate Professor in Neurology at the University of Nottingham, UK. His research focuses on understanding the biological mechanisms behind MS progression and improving personalized treatment strategies. A Hopeful Outlook Genetic testing has become dramatically more affordable in recent years. Although validation studies are still needed, this research may one day help predict prognosis and guide treatment decisions more precisely – potentially within the next decade. As always: this episode provides scientific insights but does not replace individual medical advice. Connect & Follow You can follow Dr. Kreft's research updates via LinkedIn and through the University of Nottingham. Read the full interview on genetic subtypes in MS and their impact on progression and treatment on my blog at: https://ms-perspektive.de/en/155-genetic-subtypes --- 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.

    33 min
  3. FEB 18

    How Pharmacovigilance Keeps MS Therapies Safe: From Drug Development to Real-World Monitoring (with Dr. Nora Möhn)

    How safe are MS therapies? And how do we actually know? In this episode, neurologist Dr. Nora Möhn explains the concept of pharmacovigilance — the continuous monitoring of drug safety from early development through approval and real-world use. This conversation was originally published in September 2023 on the German MS-Perspektive podcast. For this English edition, regulatory references and country-specific details have been carefully adapted to reflect internationally relevant systems and resources. The medical content remains fully up to date. You will learn: What pharmacovigilance means and why it is essential for people with MS How safety data is collected in Phase I–IV clinical trials How rare side effects are detected after market approval How neurologists assess the benefit-risk profile of MS therapies What special considerations apply during pregnancy, in children/adolescents, and in older patients How patients can report suspected side effects in different countries Why ongoing monitoring builds trust and treatment confidence A well-monitored therapy not only slows down MS — it enables long-term safety, confidence, and self-determined living. 🔗 Read the full article here: https://ms-perspektive.de//en/154-pharmacovigilance 🌍 International Pharmacovigilance Reporting Systems If you would like to report suspected side effects, you can contact your national medicines authority. Here are official resources: European Union European Medicines Agency (EMA) – EudraVigilance https://www.adrreports.eu https://www.ema.europa.eu United States FDA MedWatch Program https://www.fda.gov/medwatch https://www.fda.gov/safety/medwatch-fda-safety-information-and-adverse-event-reporting-program United Kingdom MHRA Yellow Card Scheme https://yellowcard.mhra.gov.uk Canada Health Canada – Canada Vigilance Program https://www.canada.ca/en/health-canada/services/drugs-health-products/medeffect-canada/adverse-reaction-reporting.html Is there anything else you would like to say to our listeners? Dr. Nora Möhn: I would like to express my sincere thanks for listening and for your interest in this exciting topic. I would also like to encourage all those affected to openly express any concerns or worries they may have regarding drug safety/potential side effects to their healthcare providers so that an informed treatment decision can be made in consultation with them. The field of MS therapeutics can sometimes be very confusing and overwhelming, so it is essential to address any uncertainties and fears. Where can you find her and her scientific work on the Internet? Dr. Nora Möhn: My scientific publications can be found via PubMed by searching for "Nora Möhn" on the website of the U.S. National Library of Medicine (NIH): https://pubmed.ncbi.nlm.nih.gov Further professional information and updates can be found on my LinkedIn profile. --- I hope you now know more about pharmacovigilance and feel confident enough to discuss any concerns or fears you may have about the treatments suggested to you with your doctor. And remember, even though MS has become much less frightening, it is still a serious disease that should be slowed down as much as possible with medication and a healthy lifestyle. This will ensure that you can still lead a fulfilling life in several decades' time and won't have to regret missed opportunities. 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. ⚠️ Medical Disclaimer This podcast provides medical background information but does not replace individual medical advice. Please discuss all therapy decisions and concerns with your treating neurologist.

    29 min
  4. FEB 11

    How Exercise Boosts Your Immune System: What People with MS Should Know with David Walzik

    In this episode of MS-Perspektive International, host Nele von Horsten speaks with David Walzik, PhD student in exercise science at TU Dortmund University and medical student at the University of Cologne, about exercise immunology and what current research can tell us about immune adaptation through movement. David explains the difference between epidemiological findings and underlying biological mechanisms, and shares results from a recent study comparing high-intensity interval training (HIIT) with moderate-intensity continuous exercise. While both types of exercise mobilized immune cells, high-intensity exercise led to much stronger changes inside the immune cells — with over 1,000 proteins reorganized after just one session. Photo of David Walzik (Copyright: Niklas Joisten, TU Dortmund, Germany) They also discuss what this could mean for people living with multiple sclerosis, why flexibility matters when symptoms fluctuate, and why community and support are key to building sustainable exercise habits. 👉 You can read the full interview on the blog, where all questions and answers are available in detail and easy to follow: https://ms-perspektive.de/en/153-exercise 🧩 Topics covered in this episode What exercise immunology is and why it matters How exercise affects immune cells HIIT vs moderate exercise: what's the difference? Can the immune system be "trained" like a muscle? What we still need to learn specifically for people with MS Why regular movement matters more than perfect training 💛 A gentle reminder You don't have to exercise perfectly or intensely to benefit. The most important thing is to stay active regularly. Whether it's walking, cycling, strength training, or something else you enjoy — consistency matters more than intensity, especially when living with MS. 🔎 Read more 📖 Full interview & background: All questions and answers from this episode are available on the MS-Perspektive blog, including detailed explanations and practical insights: https://ms-perspektive.de/en/153-exercise --- 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.

    36 min
  5. FEB 4

    EUPATI: Empowering Patient Voices in Medical Research and Innovation with Dr. Ingrid Klingmann

    This time I speak with Dr. Ingrid Klingmann about empowering patient voices in medical research and innovation. Dr. Klingmann is one of the initiators of EUPATI, a European initiative dedicated to educating patients about the medicines development process. Drawing on her experience as a physician, researcher, and former cancer patient, she explains why informed patients are essential partners in clinical research. The conversation explores how patient education improves clinical trials, why lay summaries matter, and how digital tools can help patients move from passive recipients to active contributors in healthcare and research. Topics covered in this episode: Dr. Ingrid Klingmann's journey from family physician to medical research Why EUPATI was founded and which gap it fills The benefits of patient involvement for research and industry How patients can influence clinical trial design Why health literacy and education are key to empowerment The future of patient involvement in medical research Resources & Links: EUPATI – European Patients' Academy on Therapeutic Innovation: Home | EUPATI Open Classroom More episodes and blog articles: https://ms-perspektive.de/en/152-eupati Finally, what message would you like to leave with our listeners, especially patients? Dr. Ingrid Klingmann: Please explore EUPATI and use the resources available. Move away from complaining and toward action. Knowledge builds confidence, and confidence empowers patients to shape their own healthcare journey. --- 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.

    46 min
  6. JAN 28

    Redesigning life with MS. Paola Escamilla Greenham on advocacy, empowerment & purpose

    In this episode of the MS Perspektive Podcast, Nele von Horsten speaks with Paola Escamilla Greenham, MS patient advocate and patient experience designer living in Grenoble, France. Paola shares how her life with multiple sclerosis reshaped her priorities and led her toward patient advocacy across Europe. She talks openly about her diagnosis, the emotional shock that followed, and why joy has become her guiding principle in daily life. The conversation explores the importance of community, lived experience in healthcare design, and Paola's vision for involving patients more meaningfully in MedTech and Biotech innovation. We also discuss Paola's journey through the EUPATI program, her work as a business angel, and what empowerment truly means when living with a chronic illness. This episode offers inspiration, honesty, and a strong reminder: living well with MS starts with listening to your body and choosing what brings you joy. 📝 Topics covered in this episode Living with MS between Mexico, France, and Europe Diagnosis, shock, and patient experience Joy, energy, and improvisational theatre Patient advocacy and community support Lived experience in healthcare design Empowerment and future perspectives in MS care 🔗 Links & Resources 🌍 Learn more about EUPATI: https://eupati.eu 💼 Connect with Paola on LinkedIn: Paola Escamilla Greenham | LinkedIn 📖 Read the full blog article: 👉 https://ms-perspektive.de/en/151-paola ... 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.

    46 min
  7. JAN 21

    Treating chronic smoldering inflammation: How far has research come? With Dr. Boris Kallmann

    Research News with Dr. Boris Kallmann In this episode of the MS Perspective Podcast, we focus on chronic smoldering inflammation in multiple sclerosis (MS) – a process that can drive slow disease progression, even when relapses no longer occur. I speak with Dr. Boris Kallmann, neurologist and MS specialist, about how these subtle changes develop, how they can be recognized in everyday clinical practice, and which treatment options are available today – and may become available in the near future. 👉 You can also read the full interview on my blog, where this episode is available as a written article. ℹ️ Important notes This episode is the English translation of the original German interview. The conversation was translated carefully to preserve medical accuracy and meaning. This episode was supported by Sanofi S.A. The content reflects independent editorial work. 🧠 Topics covered in this episode What chronic smoldering inflammation means in MS Why MS can progress slowly without relapses How neurologists recognize subtle, long-term changes The importance of listening closely to patients' experiences Using digital tools and smartphones to monitor disease progression Realistic therapy goals when progression is present The three key pillars of MS management: lifestyle and physical activity symptom management immunomodulatory therapies New therapeutic approaches and insights from clinical trials BTK inhibitors: how they work, what makes them different, and why they are promising What "non-inferiority" in clinical studies really means Possible side effects and the need for careful monitoring Why new therapies may initially be used in specialized MS centers Challenges in rural healthcare and the importance of collaboration What the future of MS treatment may look like in the next five years 📖 You can also read the full interview on my blog for a detailed, structured version of the conversation: https://ms-perspektive.de/en/150-boris-kallmann 💬 Takeaway MS is highly individual – and so are the ways people experience progression. Staying informed, observing changes over time, and working closely with experienced healthcare providers can make a meaningful difference.

    18 min
  8. JAN 14

    What Your Mouth Reveals About MS. Prof. Dr. Ashutosh Mangalam on the Oral Microbiome and Future Therapies

    What can your mouth tell us about multiple sclerosis? In this episode of the MS-Perspektive Podcast, Professor Dr. Ashutosh Mangalam, immunologist and microbiome researcher at the University of Iowa, shares fascinating insights into the oral microbiome and multiple sclerosis. While most MS research focuses on the gut, this conversation highlights why oral bacteria and their metabolites may also play an important role in inflammation, immune regulation, and disease activity. We talk about what the microbiome is, how the oral microbiome differs in people with MS, and why beneficial bacteria are reduced while potentially harmful ones increase. Professor Mangalam explains the relevance of microbial metabolites such as hypotaurine, discusses whether saliva could become a future biomarker for MS monitoring, and why oral health and regular dental care matter for people living with MS. The episode also explores how combining oral, gut, and blood-based markers could support more personalized MS care in the future. you can read the interview here: https://ms-perspektive.de/EN/149-ashu-mangalam 📌 Topics covered in this episode What the microbiome is and why it matters in MS The role of the oral microbiome in relapsing-remitting MS Dysbiosis: loss of beneficial bacteria and rise of pathogenic species Microbial metabolites and inflammation Saliva as a potential biomarker for MS monitoring Oral health, dental care, and lifestyle factors Personalized MS treatment using microbiome-based markers Future directions in MS and microbiome research Final message to people living with MS Prof. Dr. Ashutosh Mangalam: MS should not define you. A healthy lifestyle, social support, and staying positive truly matter. I have great respect for what people with MS go through every day. From a researcher's perspective, it is incredibly important for us to listen to patients, understand their real challenges, and work on questions that can truly improve quality of life. That is what motivates my work. Nele von Horsten: Thank you so much, Ashu, for this insightful and hopeful conversation. --- 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.

    55 min

About

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.