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. 5d ago

    Cannabis and multiple sclerosis. Benefits, risks, CHS and what you should know

    Cannabis is a popular and often emotional topic in the MS community. Some people hope it may help with spasticity, pain, sleep or other symptoms, while others are concerned about side effects, cognitive changes, dependency, high-potency THC products or complications such as cannabinoid hyperemesis syndrome, or CHS. In this solo episode, I take a balanced look at what we currently know about cannabis and multiple sclerosis. I explain the difference between medical cannabinoid treatments such as Sativex/nabiximols, THC, CBD, recreational cannabis, edibles, concentrates and synthetic cannabinoid products. I also discuss where the evidence is strongest, where it is still uncertain, and why product type, dose and frequency matter. The episode was inspired in part by reporting from National Geographic on CHS and modern high-potency cannabis products. I also include current MS-specific research and practical questions you can discuss with your neurologist. In this episode Why cannabis is such a popular topic in the MS community What THC, CBD and other cannabinoids are Why cannabis is not one single treatment What Sativex/nabiximols is and where it is already used in MS What the evidence says about spasticity What we know, and do not yet know, about pain, sleep and bladder symptoms Why current research comparing THC and CBD is so interesting Why CBD should not automatically be considered an MS treatment Why cannabinoids do not replace disease-modifying MS therapy Possible effects on cognition in people with MS What cannabinoid hyperemesis syndrome, or CHS, is Why CHS can be difficult to recognize Why symptoms may continue for some time after stopping cannabis A practical CHS self-check Why high-potency THC products deserve special caution Why edibles can be difficult to dose The difference between prescription cannabinoids, recreational cannabis and synthetic cannabinoid receptor agonists such as K2 or Spice Why delta-8 THC deserves particular attention in the US A brief look at the legal situation in the US, Germany and other countries Practical questions to ask your neurologist before trying a cannabinoid-based treatment How to monitor whether a treatment is actually improving your quality of life Read the full blog post You can find the full article on: https://ms-perspektive.de/en/180-cannabis/ The blog post includes the detailed discussion behind this episode as well as the studies, reviews, official guidance and original sources used for the podcast, including research on MS spasticity, cognition, THC versus CBD, CHS and high-potency cannabis products. Important note This episode is intended to inform, not to promote or discourage cannabis use in general. Cannabinoid-based medicines may be helpful for some people with MS, particularly for certain symptoms, but benefits and risks depend on the exact substance, formulation, dose, frequency of use and individual situation. Please discuss any cannabinoid-based treatment with your neurologist or another qualified healthcare professional, especially if you already take other medications or experience cognitive problems, dizziness, balance issues, recurrent nausea or vomiting. The information in this episode does not replace individual medical advice. --- 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. Aug 19

    #179: Multiple Sclerosis without the noise. Dominic Shadbolt on 35 years with MS, treatment and real patient involvement

    What does living with multiple sclerosis for 35 years teach you about treatment, disability, information and the role MS should have in your life? In this episode, I talk with Dominic Shadbolt, founder of theMSguide and PatientSignal, about his long MS journey – from years of denial to becoming an outspoken patient advocate. We discuss his experience with several disease-modifying therapies, his thoughts on HSCT, increasing disability and the importance of staying physically active. Dominic also shares why misinformation makes him angry, what genuine patient involvement should look like and why shared decision-making needs both informed patients and responsible healthcare professionals. Above all, his message is clear: take MS seriously, stay informed – but don't let it become your whole identity. In this episode, we talk about Dominic's life and almost 35 years with MS moving from denial to patient advocacy his journey through several MS treatments what he wishes he had known about HSCT earlier coping with increasing mobility limitations misinformation, miracle claims and trustworthy MS information communication between people with MS and healthcare professionals genuine patient involvement versus "patient washing" shared responsibility in treatment decisions AI, MRI and the challenge of predicting individual MS progression Dominic's work with theMSguide and PatientSignal CAR-T cell therapy and hopes for the future of MS treatment why MS should remain behind you rather than define your life Read the full interview: https://ms-perspektive.de/en/179-dominic-shadbolt/ Find Dominic online: https://themsguide.com/ https://dominicshadbolt.substack.com/ Related episodes: Aaron Boster – 10 red flags when to change your neurologist: https://ms-perspektive.de/en/004-aaron-boster/ aHSCT in MS with Prof. Roland Martin: https://ms-perspektive.de/en/40-ahsct-roland-martin/ AI-assisted MS care and the CLAIMS project: https://ms-perspektive.de/en/172-claims/ CAR-T cell therapy for MS with Prof. Barbara Willekens: https://ms-perspektive.de/en/163-car-t-cell-therapy/ Find Dominic online: theMSguide: https://themsguide.com/ Substack: https://dominicshadbolt.substack.com/ LinkedIn: https://www.linkedin.com/in/tmsg/ What would you like to leave our listeners with? Dominic Shadbolt: The world has not ended. I know that for many people it feels as though it has. But focus on the things you can do rather than only on the things you cannot. I have been highly athletic throughout my life. Now MS is taking away the function of my right leg. It feels as though my right leg is no longer part of the team. And I simply have to deal with that. There is a phrase I heard from a Belgian neurologist that I really like. MS is like your shadow. You should keep it behind you. If it comes into view, do something about it. But until then, keep it behind you. I think that is a great way of looking at it. Take the disease seriously. Get informed. Get treated. Pay attention when something changes. But do not make MS the whole of your life. --- 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. Aug 12

    Tai Chi and Qigong for MS: Supporting Balance, Movement and Body Awareness – Interview with Mirko Lorenz

    Tai Chi and Qigong can be gentle, adaptable ways to support balance, coordination, mobility and body awareness in people with multiple sclerosis. In this episode, I talk with Tai Chi instructor Mirko Lorenz about how these movement practices can be adapted for people with different levels of mobility and why slow, controlled movements can be surprisingly demanding. Read the full interview on my blog: https://ms-perspektive.de/en/178-taichi-qigong/ We discuss: the difference between Tai Chi and Qigong how Tai Chi may support balance and coordination the role of proprioception and body awareness how exercises can be adapted for reduced mobility seated practice and the use of chairs or walking aids gentle movement when spasticity or muscle tension is present concentration and the mental challenge of slow movement fatigue and the importance of adapting intensity how beginners can build up practice step by step when it makes sense to practise independently at home why guidance from an experienced instructor can be helpful practical observations from Mirko's work with people with MS and other neurological conditions what current research suggests about Tai Chi in MS why consistency, self-awareness and finding the right form of movement matter More information: https://taiji-therapy.com/ "Stay active in a way that feels right for you. Small, consistent steps can build confidence in your body and in what is still possible." --- 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. Aug 5

    A First Diagnosis of Multiple Sclerosis: Symptoms, Tests, and Next Steps

    What may be the first signs of multiple sclerosis? Which tests are needed to diagnose MS, and what happens after the diagnosis? In this episode, I speak with Dr Datzmann, Senior Consultant at the MS Centre of Bezirksklinikum Mainkofen in Germany. He explains why diagnosing MS is like putting together a puzzle. Important pieces include the medical history, neurological examination, MRI scans, cerebrospinal fluid testing and the exclusion of other conditions. We also discuss common early symptoms such as optic neuritis, sensory changes, walking difficulties, bladder problems and double vision. Dr Datzmann explains why a diagnosis may not always be confirmed after the first clinical event and how he supports people during this emotionally challenging time. Most importantly, he emphasises that MS does not automatically mean needing a wheelchair and that effective treatment options are available. This episode is an adapted English version of an interview originally conducted in German in February 2021. In This Episode Common early symptoms of multiple sclerosis Optic neuritis and sensory changes The role of the neurological examination MRI scans of the brain and spinal cord Cerebrospinal fluid testing and oligoclonal bands Conditions that may resemble MS Clinically isolated syndrome and the first relapse Communicating the diagnosis with empathy Treatment and follow-up care after diagnosis Cooperation between neurologists and specialised MS centres Diagnostic Update Since the original interview, the diagnostic criteria have been revised. The 2024 McDonald criteria, published in 2025, include additional imaging and laboratory biomarkers that may support an earlier and more accurate MS diagnosis in appropriate cases. This means that some people may receive a confirmed diagnosis sooner instead of remaining diagnosed with clinically isolated syndrome for an extended period. Learn more in my dedicated episode and article: https://ms-perspektive.de/en/139-2024-mcdonald-criteria/ Treatment Update Modern MS care increasingly considers early use of highly effective treatment for people with active disease. This approach is sometimes described as "hit hard and early" or "flipping the pyramid". The aim is to use the early window of opportunity to reduce inflammatory activity and protect the brain and spinal cord. To learn more, see Sequencing and Escalation in MS Treatment with Prof. Tomas Kalincik, Immunotherapy for MS with Prof. Tjalf Ziemssen and Brain Health: Time Matters in MS. Blog Article Read the full adapted English interview: https://ms-perspektive.de/en/177-first-diagnosis-ms/ Chapters 00:00 Introduction 00:57 Dr Datzmann's path into neurology 02:10 Common first symptoms of MS 04:35 How multiple sclerosis is diagnosed 06:34 Understanding MRI findings 07:51 Ruling out other conditions 08:59 Can MS be diagnosed after the first relapse? 10:44 How long does it take to receive a clear diagnosis? 12:27 Communicating the diagnosis with empathy 13:07 Explaining multiple sclerosis clearly 14:46 Why MS does not automatically mean a wheelchair 16:46 Personal experiences with MS treatment 18:23 Treatment advice after diagnosis 20:14 Follow-up care with a neurologist and MS centre 20:51 MRI, blood and cognitive monitoring 22:39 The Mainkofen MS Centre 24:09 Closing thoughts Conclusion: A Careful Diagnosis Creates the Basis for Early Treatment A first diagnosis of multiple sclerosis is based on several pieces of evidence. These include a detailed medical history, a neurological examination, MRI scans of the brain and sometimes the spinal cord, cerebrospinal fluid testing, and the exclusion of other conditions. The final diagnosis may not always be clear after the first neurological event. Regular follow-up checks can help identify further disease activity at an early stage. A calm and understandable conversation is just as important as the medical tests themselves. The diagnosis can initially feel frightening, but it does not automatically mean that an active and independent life is no longer possible. Today, a range of effective MS treatments is available. Together with specialised neurological care, they can help reduce inflammatory activity, protect neurological function, and maintain quality of life over the long term. About the MS Centre At the time of the interview, the Mainkofen MS Centre primarily served patients from Lower Bavaria and neighbouring regions. For current information about appointments, referrals, and contact details, please visit the clinic's official website. https://www.mainkofen.de/neurologie/multiple-sklerose/ --- 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. Jul 22

    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.

  6. 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.

  7. 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.

  8. 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.

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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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