
Advertise on podcast: MS-Perspektive - The Multiple Sclerosis Podcast
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This podcast has
191 episodes
Language
EnglishPublisher
Nele von HorstenExplicit
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Date created
2023/08/30
Latest episode
2026/10/28
Average duration
40 min.
Release period
8 days
Description
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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Check latest episodes from MS-Perspektive - The Multiple Sclerosis Podcast podcast
New imaging in MS: understanding progression and finding better treatments | ECTRIMS 2026
2026/10/28
How could new imaging in MS help us understand progression and develop better treatments?
In this episode, I explore key insights from Daniel Reich's MSToronto2026 lecture and related research. Learn what paramagnetic rim lesions can reveal about chronic inflammation, why MRI findings and biological treatment effects may tell different stories, and how imaging could help identify who benefits from emerging therapies.
I also discuss tolebrutinib, the HERCULES trial, and the disappointment surrounding the US regulatory setback, alongside its EU authorisation and important safety considerations.
Topics include:
Chronic inflammation and progression without relapses Paramagnetic rim lesions and the exploratory BRaKe-MS study Imaging biomarkers for better clinical trials Tolebrutinib: evidence, limitations, and treatment access This episode is my interpretation of the lecture and research, rather than an interview with Daniel Reich.
Research and resources
Corresponding blog article von MS-Perspektive: https://ms-perspektive.de/en/189-daniel-reich-ectrims-2026/ HERCULES trial: tolebrutinib in non-relapsing secondary progressive MS Chronic active MS: research connecting imaging with tissue biology A mechanism-driven framework for MS progression European Medicines Agency: Cenrifki / tolebrutinib Sanofi's December 2025 announcement on the FDA decision ---
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.
Jan Van Amstel on EMSP's Four-Year Presidency and the Future of MS Advocacy in Europe
2026/10/21
"Get rid of MS as soon as possible and make ourselves superfluous."
— Jan van Amstel
What can a stronger European voice achieve for people living with MS? In episode #188, EMSP President Jan van Amstel shares his personal motivation and priorities for his four-year presidency. We discuss unequal access to care, why patient experiences matter, and how European cooperation can support change.
In this episode:
Access to diagnosis, treatment, rehabilitation and support
Cooperation between national MS societies
Research, patient data and the potential of AI
Financial independence and good governance
Involving younger people in MS advocacy
Chapters:
00:45 Opening and personal background
04:52 The four-year presidency
06:10 The role of EMSP and its member societies
11:08 Policy, health economics and access
16:39 Data, evidence and political arguments
20:28 Collaboration with MSIF and international partners
24:09 Governance, leadership and continuity
26:36 Future of MS advocacy in Europe
Links and resources:
Read the full interview: https://ms-perspektive.com/188-jan-van-amstel-emsp European Multiple Sclerosis Platform (EMSP)
Membership Capacity Building
MS Barometer
Impact of Multiple Sclerosis Symptoms (IMSS)
EBV-MS
IMMUTOL
WISDOM
More-EUROPA
MS International Federation (MSIF)
International Progressive MS Alliance
World MS Day
Young People's Network (YPN)
Related episodes:
#176: Tim Coetzee on progressive MS research — find the episode in the podcast overview
#131: Joke Soetaert on youth advocacy and patient involvement
#006: Tania Pilz on the international MS community in Austria
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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.
Aging in multiple sclerosis: relapses, progression and treatment choices with Dr. Yi Chao Foong
2026/10/14
Aging in multiple sclerosis brings new questions about relapses, gradual progression and treatment choices. In episode 187, Dr. Yi Chao Foong, an MS neurologist and researcher in Tasmania, explains why fewer relapses do not necessarily mean that MS has stopped changing.
We discuss:
What changes in the aging immune system and what PIRA means. Why late-onset MS needs careful diagnosis and individual treatment decisions. Why stopping treatment can carry risks despite years of stability. How rehabilitation, practical support and social connections can support independence. What future biomarkers might add to treatment monitoring. Explore Dr. Foong's research and listen to episode 49 with Anthony Feinstein on CogeX. Further study links are included in the accompanying blog article.
Links and resources
Read the interview and listen to episode 187 on the blog: https://ms-perspektive.de/en/187-aging-in-ms-yi-chao-foong/ Dr. Yi Chao Foong — MS Australia Aging better with MS — research project
Late-onset MS treatment study
Ocrelizumab versus interferon/glatiramer acetate in people over 60
DISCOMS trial
DOT-MS trial
Clinically silent MRI lesions and treatment escalation
National Disability Insurance Scheme — Australia
Episode 049: CogeX study with Prof. Anthony Feinstein English podcast archive
Twitter / X: @Foongahh Bluesky: @ycfoong.bsky.social LinkedIn: Yi Chao Foong suchen ORCID profile — Dr. Yi Chao Foong University of Tasmania profile and publications Chapters
00:00 Episode introduction
00:45 Introducing Dr. Yi Chao Foong and aging in MS
03:29 Why aging matters
04:36 The aging immune system and PIRA
06:56 Late-onset MS: diagnosis and treatment
08:55 Higher-efficacy treatment in older people
10:53 Stopping treatment: risks and uncertainties
13:59 Why silent MRI lesions matter
14:47 Personalizing treatment decisions
16:30 Extended interval dosing and de-escalation
18:00 Lifestyle, brain health and practical support
19:52 Supporting independence
22:39 Biomarkers and future monitoring
24:38 Hopes for prevention research
25:47 Takeaways for people with MS and families
26:49 Following Dr. Foong's research
27:37 Farewell
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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.
Protecting nerve cells in multiple sclerosis: A new path toward neuroprotection with Prof. Manuel Friese
2026/10/07
Why can multiple sclerosis progress even when relapses are well controlled? In episode 186, I speak with Prof. Manuel Friese about the next challenge in MS research: protecting nerve cells from damage and preserving function over time.
Read the full interview on my blog: https://ms-perspektive.de/en/186-manuel-friese/
Manuel is a neurologist and clinician scientist who directs the Institute of Neuroimmunology and Multiple Sclerosis in Hamburg. His team's research explores why some nerve cells withstand inflammation while others degenerate. One unexpected finding was a protective role for complement factor H inside neurons, beyond its familiar role in regulating the immune system.
We discuss how smoldering inflammation can keep nerve cells under stress, why oxidative damage matters and how ferroptosis, an iron-dependent form of cell death, fits into the picture. Manuel explains possible ways to strengthen the cells' own defenses and why getting a promising mechanism into a treatment remains a major challenge.
We also talk about alpha-lipoic acid, the Octopus trial and the importance of careful clinical testing. Early research signals can be encouraging, but they do not yet prove that a treatment safely slows disability progression.
Table of contents Opening & introduction Understanding neurodegeneration in MS The new discovery: Complement factor H From discovery to potential therapy The bigger picture: Protecting the brain in progressive MS Looking ahead Closing Introduction: Who is Prof. Manuel Friese? Prof. Manuel Friese: I'm a clinician scientist based in Hamburg, Germany, and I direct an institute for neuroimmunology and multiple sclerosis. The main focus of my research nowadays is to understand why progression in MS happens. That is also why we want to understand in much more depth how nerve cells react to inflammation. It is not so much about how inflammation occurs in the central nervous system. I think we have a fairly good understanding of that, but we still have not understood why neurons die.
This extract has been edited for readability.
Links and resources INIMS: follow the team's research Prof. Manuel Friese's UKE profile Study: Intracellular complement factor H protects neurons during CNS inflammation, Nature, 2026 Related paper: STING orchestrates the neuronal inflammatory stress response in multiple sclerosis Octopus interim results: alpha-lipoic acid moves to the next stage Octopus trial information Manuel Friese's research post on LinkedIn Related episodes #146: Chronic smoldering inflammation in MS with Dr. Klarissa Stürner #148: Recognizing silent progression in MS with Prof. Heinz Wiendl #050: The future of MS treatment with Prof. Tjalf Ziemssen Time stamps
00:32 Episode introduction 00:45 Opening & introduction 03:39 Understanding neurodegeneration in MS 15:14 The new discovery: Complement factor H 25:36 From discovery to potential therapy 31:55 The bigger picture: Protecting the brain in progressive MS 37:35 Looking ahead 39:41 Closing 41:11 Where to follow Manuel's research 42:02 Next episode and farewell The contents are for information and do 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.
Living with MS in Mexico – who gets diagnosed, who gets treated, and who gets left behind?
2026/09/30
An MS diagnosis can depend on where you live, whether you can reach a neurologist and how quickly you can get an MRI. In this episode, Nele speaks with neurologist and neuroimmunologist Dr. Enrique Gomez Figueroa about the gaps in MS care across Mexico. Enrique explains why official case numbers may miss people, what delays diagnosis and why access to an effective treatment can require a lengthy approval process. He also shares what research on switching therapies can tell us—and why listening to people with MS is essential.
In this episode:
Why MS may be underdiagnosed in parts of Mexico Barriers to diagnosis and distinguishing MS from NMOSD and MOGAD Differences between treatments available on paper and in practice When moving to a more effective therapy may be needed How research, patient voices and advocacy can improve access Links and resources Read the full interview and blog post – https://ms-perspektive.de/185-ms-in-mexico/ Atlas of MS: Mexico factsheet Enrique Gomez Figueroa's publications on PubMed Enrique Gomez Figueroa on LinkedIn MSBase study comparing treatment switches — einschließlich des Wechsels zu einer wirksameren Therapie MEXCTRIMS guideline: part I and part II 2024 revisions to the McDonald diagnostic criteria ---
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.
MS treatment across the disease course – treat early, think long-term, don't give up too soon with Prof. Klaus Schmierer
2026/09/23
Read the full blog post and interview here:
https://ms-perspektive.de/en/184-klaus-schmierer/
How early should MS treatment start, how strongly should we treat, and is there ever a point when it becomes "too late" to protect meaningful function?
In this episode, I speak with Prof. Klaus Schmierer, Professor of Neurology at Queen Mary University of London and honorary consultant neurologist at Barts Health NHS Trust, about MS treatment across the entire disease course. We look at the very beginning of MS, different treatment strategies, advanced disability, and the question of what can still be preserved at each stage.
In this episode, we discuss:
why MS treatment should start as early as possible once the diagnosis is sufficiently secure why diagnostic accuracy remains essential, especially when MRI findings can be misleading what the AttackMS trial is investigating with very early high-efficacy treatment why the traditional escalation approach may sometimes allow avoidable damage to occur the difference between continuous treatment and immune reconstitution for whom immune reconstitution approaches may be particularly suitable how to balance treatment risks against the risks of insufficiently controlled MS why "mild MS" is difficult to predict reliably in an individual person why people with advanced disability are still underrepresented in MS trials what ChariotMS is investigating in people with advanced MS why arm and hand function can be crucial for independence even when walking is already severely limited why a high EDSS score alone should not automatically be a reason to stop disease-modifying treatment whether there may be several different treatment windows across the disease course which developments Klaus would like to see in the next five years, including better biomarkers, neuroprotection, repair and more equitable access to treatment Klaus' key message is: treat early, think long-term and don't give up too soon.
Links & resources Full blog post and interview:
https://ms-perspektive.de/en/184-klaus-schmierer/
AttackMS – how early should we use highly effective DMTs?
MS Society UK:
https://www.mssociety.org.uk/research/latest-research/research-blog/attackms-how-early-should-we-use-highly-effective-dmts
ChariotMS – can cladribine slow worsening in advanced MS?
MS Society UK:
https://www.mssociety.org.uk/research/explore-our-research/search-our-research-projects/chariotms-can-cladribine-slow-worsening
#002: How can a rapid and clear MS diagnosis be made?
https://ms-perspektive.de/en/002-diagnosis/
#179: Multiple sclerosis without the noise – Dominic Shadbolt
https://ms-perspektive.de/en/179-dominic-shadbolt/
#125: The MS Brain Health Strategy with Prof. Barbara Willekens
https://ms-perspektive.de/en/125-barbara-willekens/
#040: Autologous stem cell therapy (aHSCT) in MS with Prof. Roland Martin
https://ms-perspektive.de/en/40-ahsct-roland-martin/
#049: CogeX study insights for progressive MS with Prof. Anthony Feinstein
https://ms-perspektive.de/en/049-cogex-anthony-feinstein/
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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.
Silent progression in MS. Can we really detect it early?
2026/09/16
Can we detect gradual MS progression before it becomes obvious?
In this episode, I look at what current research can — and cannot — tell us about subtle worsening without an obvious relapse.
The key distinction is important: noticing a change, detecting a trend, confirming progression and understanding its biological cause are four different steps.
We look at why a single clinic visit cannot prove irreversible progression, what the EDSS may miss, and how patient-reported outcomes and self-administered tests could help identify meaningful changes earlier.
I also discuss what MRI, OCT, neurofilament light chain (NfL), GFAP and newer approaches such as BrainAGE can add — and why none of them currently functions as a stand-alone "progression detector".
In this episode Why gradual worsening can occur without an obvious relapse Why one abnormal measurement does not prove progression What the EDSS may miss How patient-reported outcomes and self-administered tests can add important information The difference between PIRA and smouldering MS Why "independent of a recognised relapse" does not necessarily mean "independent of inflammation" What MRI, OCT, NfL and GFAP can — and cannot — tell us Why different biomarkers may give different answers Why repeated measurements over time matter more than one snapshot What people with MS can realistically observe in everyday life without constantly monitoring themselves Read the full article Silent progression in MS: Can we really detect it early?
👉 https://ms-perspektive.de/en/183-silent-progression/
Infographic: four steps towards confirming progression
Research papers behind this episode Voigt I, Ziemssen T.
Detecting progressing events in multiple sclerosis clinics in real-time is possible: No.
Multiple Sclerosis Journal. 2026;32(6):570–572.
https://doi.org/10.1177/13524585251409547
Key role in this episode: Why earlier detection is not the same as real-time confirmation of irreversible progression.
Reinders EM, Masot-Llima A, Otero-Romero S, et al.
Assessing progression independent of relapse activity in multiple sclerosis using a patient-reported disability measure and self-administered neuroperformance outcomes.
Annals of Neurology. 2026;100:525–546.
https://doi.org/10.1002/ana.78275
Key role: Evidence from 9,088 people with MS showing that patient-reported and self-administered measures can capture clinically meaningful change, while only partly overlapping with EDSS-based PIRA.
Bsteh G, Dal-Bianco A, Krajnc N, Berger T.
Biomarkers of progression independent of relapse activity—Can we actually measure it yet?
International Journal of Molecular Sciences. 2025;26:4704.
https://doi.org/10.3390/ijms26104704
Key role: Overview of EDSS, functional testing, MRI, OCT, NfL, GFAP and multimodal approaches, including the important distinction between predicting future PIRA and measuring ongoing progression.
Ciccarelli O, Barkhof F, Calabrese M, et al., MAGNIMS Study Group.
Using the progression independent of relapse activity framework to unveil the pathobiological foundations of multiple sclerosis.
Neurology. 2024;103:e209444.
https://doi.org/10.1212/WNL.0000000000209444
Key role: Why PIRA is a useful clinical framework but not a single biological process, and why PIRMA is difficult to establish in routine care.
Pawlitzki M, Kirschner P, Masanneck L, et al.
Brain age gap in multiple sclerosis: associated with disability but independent of serum biomarkers.
Therapeutic Advances in Neurological Disorders. 2026;19:1–13.
https://doi.org/10.1177/17562864261458516
Key role: An example of why different biomarkers may capture different aspects of MS rather than providing one universal measure of progression.
Kappos L, Wolinsky JS, Giovannoni G, et al.
Contribution of relapse-independent progression vs relapse-associated worsening to overall confirmed disability accumulation in typical relapsing multiple sclerosis in a pooled analysis of 2 randomized clinical trials.
JAMA Neurology. 2020;77(9):1132–1140.
https://doi.org/10.1001/jamaneurol.2020.1568
Key role: Historical context for why relapse-independent disability accumulation became such an important topic in relapsing 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.
How excercise can influence multiple sclerosis – interview with Prof. Dr. Dr. Philipp Zimmer
2026/09/09
This episode is the English translation and adaptation of my original German interview with Prof. Dr. Dr. Philipp Zimmer, first published in August 2023.
Prof. Zimmer is a sports scientist, neuroscientist and expert in exercise immunology. In our conversation, we explore how physical activity and structured exercise can influence multiple sclerosis, what happens in the immune system when we exercise, and why strength, endurance and balance training can all play an important role for people living with MS.
We also talk about fatigue, cognition, mobility, recovery and the question of how much exercise is actually helpful.
You will learn:
how exercise can influence the immune system why natural killer cells and regulatory T cells are important which MS symptoms may benefit from regular physical activity why aerobic exercise is particularly interesting from an immunological perspective why strength and balance training also matter how much exercise is generally recommended why more exercise is not always better how recovery and individual adaptation influence training how people with MS can get started even if they have not exercised much before why enjoying your chosen activity is so important for long-term motivation where to find exercise ideas and evidence-based resources for different levels of mobility Prof. Zimmer also explains why exercise is particularly valuable because it gives people with MS something they can actively contribute to their own health and wellbeing.
Please note that this interview was originally recorded and published in 2023. Research continues to evolve, so I have added current and internationally relevant resources to the accompanying blog article and link list.
The information in this episode is for educational purposes and does not replace individual medical advice.
Links and resources Blog article Read the full English interview and accompanying resources on MS-Perspektive:
https://ms-perspektive.de/en/
Note: Please replace this with the final direct URL of the English Prof. Zimmer article once it has been published.
Original German interview Wie Sport die MS beeinflussen kann mit Prof. Dr. Dr. Philipp Zimmer:
https://ms-perspektive.de/210-philipp-zimmer/
Prof. Dr. Dr. Philipp Zimmer English profile at TU Dortmund University:
https://sport.kmst.tu-dortmund.de/en/institute/personnel/prof-dr-dr-philipp-zimmer/
WHO recommendations on physical activity World Health Organization – physical activity recommendations:
https://www.who.int/europe/news-room/fact-sheets/item/physical-activity
Exercise and physical activity resources for people with MS MS International Federation – Physical activity for people with MS:
https://www.msif.org/resource/physical-activity-for-people-with-ms/
MS International Federation / European Multiple Sclerosis Platform – Keep moving with MS:
https://www.msif.org/resource/keep-moving-with-ms/
MS Society UK – Simple exercises for MS:
https://www.mssociety.org.uk/living-with-ms/physical-and-mental-health/staying-active/simple-exercises-for-ms
Research PubMed – Fitness, physical activity, and exercise in multiple sclerosis:
https://pubmed.ncbi.nlm.nih.gov/35084560/
Related English interviews and articles on MS-Perspektive How exercise boosts your immune system: What people with MS should know with David Walzik:
https://ms-perspektive.de/en/153-exercise/
Multiple sclerosis and pain: How exercise and physical activity can help with Rasmus Christian Jungersen:
https://ms-perspektive.de/en/175-rasmus/
Movement limitations in MS – how to maintain strength, balance and mobility:
https://ms-perspektive.de/en/018-movement-limitations/
EBV insights: Shedding light on its impact on MS with Prof. Christian Münz:
https://ms-perspektive.de/en/52-christian-muenz/
German exercise consultation mentioned in the interview DMSG Nordrhein-Westfalen – Sport-Sprechstunde:
https://dmsg-nrw.de/sport-sprechstunde/
Please note that this service is primarily aimed at the German-speaking MS community. International listeners may find the MSIF, EMSP and MS Society UK resources above more directly useful.
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Until next time – make the most of your life, and ideally include some regular movement along the way.
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.
Stress and MS: factors, challenges and perspectives with Prof. Sigrid Arnade and Prof. Christoph Heesen
2026/09/02
This episode is the English translation of my original German interview with Prof. Sigrid Arnade and Prof. Christoph Heesen, first published in April 2025. We explore what research currently tells us about stress and MS, where the evidence is still limited, and why psychological and social factors deserve a stronger place alongside biological aspects of multiple sclerosis care.
We discuss:
how severe stress and traumatic experiences may influence MS risk and disease activity why everyday stress is so difficult to study scientifically the difference between traumatic events and chronic stress resilience, self-efficacy and empowerment stress-management interventions and psychotherapy gaps in current MS research practical strategies for coping with stress why MS care should follow a genuinely biopsychosocial approach Useful links English blog article: https://ms-perspektive.de/en-181-stress/ Original German interview and blog article: Stress und MS. Faktoren, Herausforderungen und Perspektiven Lebensnerv Foundation: www.lebensnerv.de Institute of Neuroimmunology and Multiple Sclerosis (INIMS), Hamburg: www.inims.de "What is good for me, what is not good for me? And how can I strengthen the things that are good for me?"
— Prof. Sigrid Arnade
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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.
Cannabis and multiple sclerosis. Benefits, risks, CHS and what you should know
2026/08/26
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.
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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.
#179: Multiple Sclerosis without the noise. Dominic Shadbolt on 35 years with MS, treatment and real patient involvement
2026/08/19
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.
Tai Chi and Qigong for MS: Supporting Balance, Movement and Body Awareness – Interview with Mirko Lorenz
2026/08/12
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."
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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.
A First Diagnosis of Multiple Sclerosis: Symptoms, Tests, and Next Steps
2026/08/05
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/
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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.
Progressive MS Research: Milestones, Setbacks and Hope with Tim Coetzee
2026/07/22
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.
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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.
Multiple Sclerosis and Pain. How Exercise and Physical Activity Can Help
2026/07/15
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
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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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