MS-Perspektive - The Multiple Sclerosis Podcast

Nele von Horsten
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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. 1D AGO

    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

  2. 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

  3. 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

  4. 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

  5. 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

  6. APR 15

    The Art of Pain Relief. Multimodal Approaches to MS (with Dr. Camelia Ionescu)

    Pain is one of the most common and challenging symptoms of multiple sclerosis (MS). In this episode, neurologist and pain specialist Dr. Camelia Ionescu explains how pain in MS develops—and how a multimodal approach can help manage it effectively. 👉 This episode is based on an interview originally recorded in German (January 2025) and has been translated to make these important insights accessible to an international audience. You'll learn how different types of pain arise, why treatment must be individualized, and how combining medication, physiotherapy, psychological support, and self-management strategies can improve quality of life. 🔎 What you'll learn in this episode What causes pain in multiple sclerosis The difference between nociceptive, neuropathic, and nociplastic pain Which medication options are available How physiotherapy and interdisciplinary care support pain relief Why psychological assessment and therapy are essential How patients can strengthen self-empowerment in everyday life Which complementary and alternative approaches may help When multimodal pain therapy becomes necessary 🌐 Read the full blog article 👉 You can find the full article with all questions and detailed answers here: https://ms-perspektive.de/en/162-pain-relief 🌍 International resources on MS & pain For further information and support, these organizations provide reliable, up-to-date resources: National Multiple Sclerosis Society MS International Federation International Association for the Study of Pain Note: This content is for informational purposes only and does not replace professional medical advice, diagnosis, or treatment. Would you like to give listeners something to take away? Dr. Camelia Ionescu: I would like to tell everyone affected: Do not give up! There are always ways to relieve pain and improve quality of life. It can take time, but together we will find the right solution. Nele von Horsten: Thank you very much, Dr. Ionescu, for the insights and valuable tips. Your work is so important. Thank you! --- 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.

    12 min

  7. APR 8

    Progressive MS (PMS) – Understanding and Treating PPMS with Dr. Thomas Knoll

    In this episode, we talk about progressive multiple sclerosis (PMS), including primary progressive MS (PPMS) and secondary progressive MS (SPMS). Neurologist Dr. Thomas Knoll shares insights from over 30 years of clinical experience, focusing on disease mechanisms, current treatment options, and what people living with progressive MS can actively do to maintain their quality of life. 💡 Note: This episode is based on an interview originally recorded in November 2023 and has been translated and adapted for an international audience. A key takeaway: While neurodegeneration is still difficult to treat, an active lifestyle, symptom management, and strong support systems can make a meaningful difference. 👉 Read the full interview (English): https://ms-perspektive.com/161-pms 🧠 Topics covered What defines PPMS and how it differs from other MS types Typical symptoms and disease progression Current treatment options and limitations Role of B-cell therapies (e.g., Ocrelizumab) Importance of early intervention Rehabilitation, physiotherapy, and lifestyle factors How to maintain quality of life with progressive MS Patient support, networks, and resources Future research and treatment perspectives 🔗 Resources & Links Organizations & Support: German Multiple Sclerosis Society (DMSG): https://www.dmsg.de AMSEL (MS patient organization): https://www.amsel.de Multiple Sclerosis International Federation (MSIF): https://www.msif.org European Multiple Sclerosis Platform (EMSP): https://www.emsp.org Recommended by Dr. Knoll: MS Selfie: https://msselfie.co.uk/ Further information & networks: NeuroTransData: https://www.neurotransdata.com NeuroTransConcept: https://www.neurotransconcept.com Neuromuenchen (Dr. Knoll): https://www.neuromuenchen.de Would you like to share a final message with the listeners? I see what a difference it makes whether patients engage with their condition or not. This helps to develop a realistic understanding, reduces fear, and creates perspective. --- Thank you to Dr. Thomas Knoll for his insights into progressive MS and for repeatedly emphasizing how important it is to actively engage with the disease in order to shape everyday life—even with 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.

    17 min

  8. APR 1

    EMSP Conference 2026 in Berlin: A Must-Attend Event for the MS Community

    The EMSP Conference 2026 is one of Europe's most important events for people living with MS, NMOSD, and MOGAD—and you can join online for free. Even though the conference takes place in Berlin this year, onsite participation is already fully booked. But the good news is: you don't have to miss out. From April 24–25, 2026, you can follow all sessions virtually and gain access to the latest insights in diagnosis, treatment, and patient care. This year's focus: 👉 From Diagnosis to Access: Data-Driven Solutions for MS, NMOSD, and MOGAD You'll hear from leading experts, researchers, and patient advocates—including familiar voices from the MS-Perspektive podcast like: Barbara Willekens: https://ms-perspektive.de/en/125-barbara-willekens/ Leda Bresnov: https://ms-perspektive.de/en/82-leda/ A unique opportunity to learn, connect, and feel empowered—no matter where you are. 🧠 Topics Covered in This Episode What makes the EMSP Conference 2026 special Why online participation is a game changer Latest developments in MS, NMOSD, and MOGAD Early diagnosis and new criteria (McDonald 2024) Access to treatment across Europe Patient perspectives and advocacy The role of data, registries, and real-world evidence Why this conference is especially valuable for people affected 🔗 Useful Links & Resources EMSP Conference 2026 (official info & registration): https://eu.eventscloud.com/website/19094/registration/ Barbara Willekens on MS-Perspektive: https://ms-perspektive.de/en/125-barbara-willekens/ Leda Bresnov on MS-Perspektive: https://ms-perspektive.de/en/82-leda/ Link to blog article:  https://ms-perspektive.de/en/160-emsp 🎯 Who This Episode Is For People living with MS, NMOSD, or MOGAD Newly diagnosed patients Caregivers and family members Healthcare professionals Anyone interested in the latest MS research and advocacy --- 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.

    9 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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