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. 2d ago

    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.

    16 min

  2. 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.

    58 min

  3. May 27

    #168: From Fragmented Care to Connected Care: The MS360° Approach with Dr. Isabel Voigt

    In this episode, Dr. Isabel Voigt from the MS Center Dresden introduces the MS360° approach, a digital-first hybrid care model designed to make multiple sclerosis care more continuous, proactive, and personalized. She explains why today's MS care can feel fragmented, how important changes may be missed between appointments, and how digital tools such as apps, wearables, patient-reported outcomes, and telemedicine could support earlier detection of disease progression. We also talk about the role of real-world data, artificial intelligence, digital twins, and patient participation in shaping the future of MS care. A special focus is placed on improving access to specialized care for people living outside larger cities. You can read through the interview here: https://ms-perspektive.de/en/168-ms360 Topics covered in this episode: Why MS care often feels fragmented How MS360° connects digital monitoring with in-person care The role of apps, wearables, and telemedicine Earlier detection of disease worsening How real-world data can support research and personalized treatment What artificial intelligence and digital twins mean for people with MS Why patient participation is key The future of connected, equitable MS care Links mentioned and further reading Original MS360° paper in npj Digital Medicine: https://www.nature.com/articles/s41746-026-02461-4 Dr. Isabel Voigt on LinkedIn: https://de.linkedin.com/in/isabel-voigt-77b6b2357 Multiple Sclerosis Living Lab Dresden: https://msz.uniklinikum-dresden.de/en/zkn/ms-living-lab #100: Digital Twins in MS Care with Prof. Tjalf Ziemssen: https://ms-perspektive.de/en/100-digital-twin/ #104: Leveraging AI in MS Care and Shared Decision-Making: https://ms-perspektive.de/en/104-ai-in-ms-care/ #158: Shared Decision Making in Multiple Sclerosis: https://ms-perspektive.de/en/158-rueffer/ #050: Future Treatment of MS with Prof. Tjalf Ziemssen: https://ms-perspektive.de/en/50-tjalf-ziemssen/ --- 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

  4. May 20

    Living with MS: Fatigue, Walking & Energy — Insights from Sanam

    In episode #167, Sanam Saeedi shares her perspective on living with MS, fatigue, walking and energy. Diagnosed in 2019, she explains how symptoms such as foot drop, balance issues and fatigue changed her daily life — and why pushing through is not always the best answer. As a neurological movement and fatigue coach, Sanam focuses on awareness, pacing, stabilization, strengthening and tracking. Her message is practical and encouraging: MS requires strategy, not just motivation. By understanding patterns in sleep, stress, nutrition, energy and movement, people with MS can make small, sustainable changes that support confidence and quality of life. Here you can find the complete shortened interview transcript. Topics covered Sanam's diagnosis and personal journey with MS Why MS fatigue and movement are closely connected Foot drop, balance issues and gait changes Why compensation can increase fatigue Fatigue pacing and energy management Small everyday changes for more control Good days, bad days and symptom tracking Rebuilding body trust after setbacks Movement confidence and living well with MS Related episodes and resources mentioned Alan Kalron: movement, balance and training strategies in MS Anthony Feinstein: staying physical, social and cognitive active Isabel Voigt and MS360°: holistic, whole-person MS care More on ms-perspektive.de: fatigue management, pacing, gait, balance, foot drop, body trust and movement confidence What would you like to leave our listeners with today? Sanam Saeedi: Trust the process. I want people to believe that they can improve. It may not happen quickly. It may take time and consistency. But improvement is possible. You do not have to do everything at once. Start where you are. Learn your patterns. Make small changes. Keep going. How and where can interested people find you online? Website: https://lalikhealthandwellness.coachesconsole.com/welcome-let-s-get-started-html LinkedIn: Sanam Saeedi | LinkedIn Instagram: Instagram TikTok: @lalik_movement_coach YouTube: (2) Lalik Neuro Coach – YouTube Work email: s.saeedi@lalikhealthandwellness.com --- 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.

    29 min

  5. May 13

    Unseen MS Symptoms: A Patient Expert's Perspective from Iceland with Hjördís Ýrr Skúladóttir

    What are unseen MS symptoms really like? In this inspiring episode, Hjördís Ýrr Skúladóttir from Iceland shares her personal journey with multiple sclerosis, from diagnosis and burnout to becoming a patient advocate and former Chair of the Icelandic MS Society. Together, we talk about invisible MS symptoms such as fatigue, bladder problems, and emotional exhaustion, while also exploring leadership, healthcare in Iceland, and the power of community support. Hjördís explains how her background in education and policing shaped her resilience and communication skills, and why she believes openness and compassion are essential for living well with MS. Topics discussed: Living with unseen MS symptoms MS fatigue and misconceptions Iceland's healthcare system The role of MS nurses Becoming a patient expert Leadership and advocacy Community support and empowerment Work-life balance with MS Hope for the future of MS care Resources & Links MS-Perspektive Podcast: https://ms-perspektive.com/166-hjoerdis Hjördis website on LinkedIn on Facebook on Instagram Iceland MS Society Icelandic MS Society Oceans of Hope

    49 min

  6. May 6

    MS Doesn't Define Me – How Patti Bevilacqua Turned Multiple Sclerosis into a Life of Purpose

    What does it really mean to live a meaningful life with multiple sclerosis? In this episode, Patti Bevilacqua shares her deeply personal journey after being diagnosed with MS at just 22 years old. Instead of trying to "push through," she chose a different path—one shaped by self-awareness, resilience, and intentional living. Today, Patti is a speaker and advocate for people with invisible challenges. In this conversation, she opens up about identity shifts, career changes, and why MS does not define who she is. 👉 Read the full blog article here: https://ms-perspektive.com/165-patti 🔍 Topics covered in this episode: Patti's MS diagnosis at age 22 Early symptoms and first reactions Letting go of a dream career Living without disease-modifying therapies Navigating uncertainty in professional life Identity shifts and invisible challenges Becoming an advocate and public speaker Mindset, resilience, and purpose Why "MS doesn't define me" Living a meaningful life beyond diagnosis 🔗 Resources & Links: Patti Bevilacqua Website: https://patti-bevilacqua.com Newsletter: https://pattibevilacqua.substack.com LinkedIn: https://linkedin.com/in/patti-bevilacqua Instagram: https://instagram.com/fearlesswithms --- 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.

    49 min

  7. Apr 29

    EMSP 2026. Progress, Hope and Real Challenges in Multiple Sclerosis

    The EMSP 2026 Conference in Berlin highlighted how much is currently evolving in multiple sclerosis (MS) – from improved diagnostics and emerging therapies to long-overdue topics like fatigue, PIRA, and menopause. In this episode, I share my personal insights from Day 1 on site and summarize the key developments from Day 2. We explore why the "MS iceberg" is still widely misunderstood, how new approaches like CAR-T and stem cell therapy are shaping the future, and why access to care across Europe remains a major challenge. 👉 Read the full blog article: https://ms-perspektive.de/en/164-emsp 🔎 What we cover in this episode Personal impressions from EMSP 2026 in Berlin Patient stories: MS and NMOSD McDonald Criteria 2024 and improved MS diagnosis The "MS iceberg" and invisible symptoms like fatigue Poster insights: fatigue as a key burden in MS MS Selfie and decision support tools for immunotherapies CAR-T cell therapy and stem cell therapy Menopause and MS PIRA (Progression Independent of Relapse Activity) Access to MS care across Europe 🔗 Mentioned resources & episodes 👉 Barbara Willekens on CAR-T cell therapy 👉 Christoph Heesen on stem cell therapy 👉 Roland Martin on aHSCT 👉 Riley Bove on menopause & MS 👉 Gavin Giovannoni on PIRA 👉 Fatigue article 👉 Article: From Fatigue to Focus (ECTRIMS insights) 👉 MS Selfie Microsite: https://msselfie.co.uk/ 👉 McDonald Criterie 2024 👉 Full blog article: https://ms-perspektive.de/en/164-emsp --- 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.

    15 min

  8. Apr 22

    CAR-T Cell Therapy for MS: Hype, Hope, or Future Standard? – A Global Research Update with Prof. Barbara Willekens

    In this episode, I speak with neurologist and researcher Professor Barbara Willekens about one of the most exciting and complex developments in MS research: CAR-T cell therapy. Originally developed for blood cancers, this innovative treatment is now being explored for autoimmune diseases like multiple sclerosis. We discuss how CAR-T therapy works, how it differs from existing MS treatments, and why it may have the potential to "reset" the immune system. At the same time, we take a close look at the current scientific evidence, including early clinical data, safety concerns, and why this therapy is still far from routine clinical use. You'll also learn who might be eligible for current trials and what the future of CAR-T in MS care could look like. You can read the full blog article here: https://ms-perspektive.de/EN/163-car-t-cell-therapy 🧠 What you'll learn in this episode What CAR-T cell therapy is and how it works Why B cells play a key role in MS How CAR-T differs from current MS treatments What "immune reset" means—and why it's still a hypothesis Who might be eligible for CAR-T therapy trials Risks such as cytokine release syndrome and neurotoxicity What we can learn from lupus and cancer research Where clinical trials are currently taking place Why experts are both hopeful and cautious 🔬 Resources & Links Previous episode: MS Brain Health Strategy (Episode 125) Clinical trials database: https://clinicaltrials.gov Mackensen et al., Nature Medicine (2022) – CAR-T in lupus DiLillo et al., Blood Advances (2021) Note: This episode is for informational purposes only and does not replace medical advice. Please consult your healthcare provider before making any treatment decisions. --- 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.

    40 min
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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.

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