MS-Perspektive - The Multiple Sclerosis Podcast

Nele Handwerker
MS-Perspektive - The Multiple Sclerosis Podcast

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. قبل ٤ أيام

    Immune Tolerance and MS. How the RED4MS Study Could Change MS Treatment with Dr. Andreas Lutterotti

    Andreas Lutterotti explains the mode of action, the concept of the early clinical trial RED4MS, and what a success could mean for patients. You can read through all questions and answers on my blog: https://ms-perspektive.com/88-red4ms Multiple sclerosis is one of the absolute success stories in terms of disease-modifying therapy. Nevertheless, the search for new concepts continues and the RED4MS study is looking in a new direction. Neurologist Dr. Andreas Lutterotti and his colleagues are researching and developing a novel approach to retraining the immune system. Find out more about the RED4MS study and how this therapy aims to reduce the symptoms of MS while maintaining normal immune function, offering hope for more targeted and safer treatment. Dr. Lutterotti provides insights into the study's objectives, patient eligibility, and what participants can expect. This early study is initially concerned with exploring the safety of the therapy. Only in the second step will the right dose be found that hits the sweet spot between efficacy and tolerability. Find out more about the possible effects of the therapy on daily life, the strict safety measures, and what might happen if the results are positive. "},"no_headings_message":"No headings were found on this page.","minimize_box":"yes","minimized_on":"tablet","hierarchical_view":"yes","min_height":{"unit":"px","size":"","sizes":[]},"min_height_tablet":{"unit":"px","size":"","sizes":[]},"min_height_mobile":{"unit":"px","size":"","sizes":[]}}" data-widget_type="table-of-contents.default"> Table of Contents Introduction – Who is Dr. Andreas Lutterotti? RED4MS: Overview of the Therapy and Potential Benefits RED4MS: Patient Experience and Eligibility RED4MS: Impact of the Therapy and Safety Monitoring RED4MS: Dosing and Administration RED4MS: Effectiveness and Expected Outcomes RED4MS: Long-term Implications and Availability Quickfire Q&A Session Farewell Introduction – Who is Dr. Andreas Lutterotti? I’m Andreas Lutterotti, originally from Austria, now living in Switzerland. I’m a neurologist with a focus on MS and a Chief Medical Officer at Cellaris AG. I’m married, have three children, and enjoy biking and traveling with my family. Finally, what message of hope or encouragement would you like to share with the listeners? Treatment development in MS has been very successful in a relatively short period of time. With more focus neuroprotective/-regenerative therapies and improvement of symptoms like fatigue we will hopefully improve the life of patients with MS in the future. How and where can interested people follow your research activities? www.cellerys.com www.clinicaltrials.gov  (contains a list of participating centers) The following countries participate in the trial: Germany Czech Republic Switzerland Italy --- Good luck with the clinical trial. Sounds like a promising mode of action. 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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  2. ١١ جمادى الأولى

    #087: Understanding and managing Neuromyelitis Optica (NMOSD). Latest Advances in treatment with Dr. Luis Alfonso Zarco

    Neuromyelitis Optica Spectrum Disorder (NMOSD) need to be diagnosed and treated fast with highly effective therapies for a good prognosis. You can read the transcript of the interview here: https://ms-perspektive.com/87-luis-alfonso-zarco Living with neuromyelitis optica spectrum disorder (NMOSD) can be challenging. But the more you understand about the condition and the latest research and treatment options, the better off you’ll be. In this interview, Professor Luis Alfonso Zarco, a leading neurologist from Colombia who specializes in NMOSD, shares insights into the symptoms, treatments, and advances in care for this rare autoimmune disease. Whether you have just been diagnosed or have been living with NMOSD for years, this conversation will give you a deep dive into the fundamentals of NMOSD care, from early recognition to personalized treatment options. Learn why timely intervention is important, how NMOSD differs from multiple sclerosis, and what the future may hold for NMOSD patients. "},"no_headings_message":"No headings were found on this page.","minimize_box":"yes","minimized_on":"tablet","hierarchical_view":"yes","min_height":{"unit":"px","size":"","sizes":[]},"min_height_tablet":{"unit":"px","size":"","sizes":[]},"min_height_mobile":{"unit":"px","size":"","sizes":[]}}" data-widget_type="table-of-contents.default"> Table of Contents Introduction – Who is Prof. Dr. Luis Alfonso Zarco Montero? Understanding Neuromyelitis Optica Spectrum Disorder (NMOSD) NMOSD Disease Course and Prognosis First-Line Treatment Options for NMOSD Challenges and Accessibility in NMOSD Treatment Future Directions in NMOSD Treatment Quickfire Q&A Session Farewell Introduction – Who is Prof. Dr. Luis Alfonso Zarco Montero? I’m Luis Alfonso Zarco, born in Barranquilla on Colombia’s Caribbean coast. I studied medicine at Universidad del Norte in Barranquilla and later specialized in neurology at Pontificia Universidad Javeriana in Bogotá. I also trained as a neuroimmunologist at Universidad Autónoma de Barcelona, and I’m currently a candidate for a Master’s degree in Multiple Sclerosis from Dresden International University and a fellow of the European Charcot Foundation. Currently, I’m based in Bogotá, where I work at Hospital Universitario San Ignacio and serve as a neurology professor at Pontificia Universidad Javeriana. As director of the Neuroscience Department, I oversee cases of high complexity. I’m married to Angelica Rico, a nurse specializing in occupational health, and we have two children: Maria Paula, a lawyer, and Luis Carlos, studying finance. I’m passionate about my work, especially caring for patients with demyelinating diseases like NMOSD. This work is meaningful because these conditions affect people’s quality of life, their aspirations, and dreams, and we can play a key role in helping them achieve their goals. Finally, what message of hope or encouragement would you like to share with individuals living with NMOSD? You’re not alone. Many professionals worldwide are dedicated to finding new treatments and improving your quality of life. Stay strong, and remember, support is always available. How and where can interested people follow your research activities? Prof. Luis Alfonso Zarco: You can follow me on Instagram at @dr_zarco. --- Nele von Horsten: Thank you for sharing your insights on NMOSD, for your research, and for your dedication to patient care. Greetings to Colombia, and I hope to see you at a future ECTRIMS conference. Prof. Luis Alfonso Zarco: Thank you, Nele. It’s been a pleasure. --- 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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  3. ٤ جمادى الأولى

    Navigating Menopause with MS – Key insights on symptom progression, aging, and personalized care (ECTRIMS Special)

    Find out how the menopause affects MS. What new research reveals about progression, symptom management, biological aging and quality of life. You can read the full article here: https://ms-perspektive.com/86-ectrims-menopause If you’re living with MS and approaching menopause, you might wonder how this life stage could impact your MS journey. Menopause is already a significant transition, bringing physical, emotional, and social changes. When combined with MS, it can feel even more complex, and many women have questions about how menopause might influence their symptoms, progression, and overall quality of life. Fortunately, new research is beginning to address these unique challenges, offering insights that could help guide care and support. In this summary, we’ll dive into several recent studies that explore different aspects of menopause and MS. From understanding if menopause affects disability levels and relapse rates, to investigating how menopause might influence biological aging in women with MS, these studies provide valuable findings. Notably, one project led by Queen Mary University in the UK took an innovative approach by involving women with MS in designing the research itself, making the results especially relevant to real-world experiences. Together, these studies offer a clearer picture of what menopause might mean for women with MS, and we’ll break down the key findings to help you understand what to expect and how this research might apply to your own journey. "},"no_headings_message":"No headings were found on this page.","minimize_box":"yes","minimized_on":"tablet","hierarchical_view":"yes","min_height":{"unit":"px","size":"","sizes":[]},"min_height_tablet":{"unit":"px","size":"","sizes":[]},"min_height_mobile":{"unit":"px","size":"","sizes":[]}}" data-widget_type="table-of-contents.default"> Table of Contents The influence of menopause on multiple sclerosis Optimising menopause management in MS through multi-stakeholder collaboration and pathway development Practical learnings from a co-designed qualitative study exploring patient experiences of multiple sclerosis and menopause Menopause affects DNA methylation and aging in women with multiple sclerosis Talk to Your Healthcare Provider for Personalized Support Talk to Your Healthcare Provider for Personalized Support If you have questions about how menopause might affect your MS, talk to your healthcare provider about any changes or symptoms you’re experiencing. They can help interpret new findings and offer guidance that’s tailored to your unique journey, supporting you in managing symptoms and maintaining your quality of life through this transition. --- 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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  4. ٢٧ ربيع الآخر

    ECTRIMS Special on innovative MS rehabilitation for better quality of life

    New approaches to MS Rehabilitation: From Telerehab to Ocean Sailing and individualized trainings plans for improved wellness. You can read the complete article here: https://ms-perspektive.com/085-ectrims-rehab Rehabilitation for multiple sclerosis (MS) is rapidly evolving, with exciting new approaches tailored to the unique needs of people with progressive MS (PwPMS). Recent studies have explored how various types of personalized therapies can improve both physical and mental well-being, offering a wider range of options for supporting a fulfilling, active life with MS. The article discusses innovative rehabilitation methods such as cognitive-affective profiling, sleep optimization, offshore sailing, and tele-rehabilitation. Each approach offers its own benefits, allowing people with MS to explore therapies that fit their specific needs and lifestyle. Whether you are looking to improve your mental focus, increase your physical resilience, or gain more flexibility in your treatment plan, these insights offer inspiring insights into the future of MS rehabilitation. "},"minimize_box":"yes","minimized_on":"tablet","hierarchical_view":"yes","min_height":{"unit":"px","size":"","sizes":[]},"min_height_tablet":{"unit":"px","size":"","sizes":[]},"min_height_mobile":{"unit":"px","size":"","sizes":[]}}" data-widget_type="table-of-contents.default"> Table of Contents Cognitive-affective profiles in people with progressive Multiple Sclerosis (PwPMS): Implications for intensive multidisciplinary in-patient rehabilitation Poor sleep has a deleterious impact on health-related quality of life in people with multiple sclerosis - The Danish MS hospitals rehabilitation study Oceans of Hope: Sailing as rehabilitation How do people with MS themselves evaluate telerehabilitation interventions? --- 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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  5. ٢٠ ربيع الآخر

    Vascular dysfunction and Multiple Sclerosis. How Your vessels Could Shape Your MS Journey with Dr. Jonathan Pansieri

    Dr. Jonathan Pansieri explains how vascular dysfunction could worsen multiple sclerosis and become a target for future treatment approaches. You can read all questions and answers here: https://ms-perspektive.com/84-Vascular-dysfunction When it comes to multiple sclerosis (MS), you probably know that the immune system plays a role in attacking the nervous system. But what if your blood vessels also played an important role? In this interview, we dive into the fascinating link between vascular dysfunction and MS with insights from Dr. Jonathan Pansieri. From how the blood-brain barrier is disrupted, to how impaired blood flow can worsen inflammation, we explore how vascular issues could be affecting your journey with MS. Understanding this link could open new doors on treatment strategies and offer fresh hope to patients living with this complex disease. "},"minimize_box":"yes","minimized_on":"tablet","hierarchical_view":"yes","min_height":{"unit":"px","size":"","sizes":[]},"min_height_tablet":{"unit":"px","size":"","sizes":[]},"min_height_mobile":{"unit":"px","size":"","sizes":[]}}" data-widget_type="table-of-contents.default"> Table of Contents Introduction – Who is Dr. Jonathan Pansieri? Vascular dysfunction Impact on MS The Role of Microglia in MS Potential Applications of Genetic Research MS, Dementia, and Alzheimer's Quickfire Q&A Session Farewell Introduction – Who is Dr. Jonathan Pansieri? I am Dr Jonathan Pansieri, neuroscientist in the Medical Science Division of the University of Oxford, and a fellow from the UK-MS society. I am 36 years-old, living with my partner who is also a scientist in the Department of Surgery focusing on prostate cancer. I am a dog person, so I would love to have 2 big dogs in the near future, but I will need to adapt my schedule for that! If there is something else to say about me, as a French citizen, I miss so much the lovely French pastries that I’m trying to make my own croissant and pain au chocolat, but despite 5 years of training now, I definitely need to improve my skills, it is such a disaster so far… How and where can interested people follow your research activities? As an academic, I’m always dedicated to share our progresses with both the research community and individuals living with progressive MS. In addition, we regularly host patient information days in Oxford to present the latest in clinical care, symptom management, and research advancements, so stay tune! You can also follow my work on Twitter (@group_deluca and @JPansieri), where I share insights and updates (though I wish I could share more!). Additionally, you can connect with me on ResearchGate (https://www.researchgate.net/profile/Jonathan-Pansieri) and LinkedIn (https://www.linkedin.com/in/jonathan-pansieri-11887bb5/), where I’m always open to discussions. Thank you all for your support—let’s keep pushing forward together! --- Many thanks to Jonathan for the exciting interview and also to all his colleagues working on the project. It sounds very promising. 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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  6. ١٣ ربيع الآخر

    ECTRIMS Special on De-escalation and discontinuation of therapies for MS – What does it mean and how can it work?

    When can we consider de-escalation or even discontinuation of a high-efficient immunotherapy for MS without risking a disease worsening? You can read the full article on my blog: https://ms-perspektive.com/83-deescalation Hello and welcome to another summary of ECTRIMS 2024, this time on the topic of de-escalation and discontinuation of therapy. There was a scientific session on this topic with six lectures, moderated by Dr. Melinda Magyari and Prof. Bernhard Hemmer. And there were also individual posters. Except for one talk about NMOSD and MOGAD, all scientific contributions were about multiple sclerosis. I will present all the contributions and their results, some of which are still preliminary. After all, it is a topic that probably affects most of us. Can or should I switch my therapy from a high efficacy to a lower one or even stop it altogether at some point, and when is that a safe approach? "},"minimize_box":"yes","minimized_on":"tablet","hierarchical_view":"yes","min_height":{"unit":"px","size":"","sizes":[]},"min_height_tablet":{"unit":"px","size":"","sizes":[]},"min_height_mobile":{"unit":"px","size":"","sizes":[]}}" data-widget_type="table-of-contents.default"> Table of Contents What does de-escalation of therapy mean? Why is de-escalation a topic? Strategies for de-escalation with anti CD20 therapies Discontinuation and de-escalation in NMOSD and MOGAD Guiding Treatment Deescalation in Relapsing Remitting Multiple Sclerosis Alternate-Day Fingolimod Tapering: Impact on Rebound Disease Activity in Patients with Multiple Sclerosis Short-term B cell depletion results in medication-free, long-term freedom from disease activity and correction of immune tolerance defect in a subset of people with relapsing MS B-cell tailored dosing versus standard interval dosing of ocrelizumab in relapsing-onset MS –Interim analysis of a randomized controlled trial (BLOOMS trial) De-escalation treatment strategies in patients with relapsing-remitting multiple sclerosis in Austria Classification of the risk of disease reactivation after de-escalation/discontinuation of disease-modifying therapy in relapsing-remitting MS using the VIAADISC score --- 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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  7. ٦ ربيع الآخر

    Living with neuromyelitis optica (NMO) in Denmark with Leda Bresnov

    Leda Bresnov shares her diagnosis, coping strategies, and insights on living with neuromyelitis optica (NMO) in Denmark. You can read all questions and answers on my blog: https://ms-perspektive.com/82-leda Meet NMO patient Leda Bresnov, a strong and inspiring woman who is originally from Brazil and has been living in Denmark since 1991. Leda, a wife and mother of two adult children, is overcoming the challenges of Neuromyelitis optica (NMO) and is trying to raise awareness of the disease. In this interview, Leda shares her personal journey with NMO, from the shock of her diagnosis to her coping strategies and the support systems she has found along the way. Through her story, she offers valuable insights into living with NMO in Denmark, how to advocate for yourself, and how to find hope and strength in the face of a rare disease. "},"minimize_box":"yes","minimized_on":"tablet","hierarchical_view":"yes","min_height":{"unit":"px","size":"","sizes":[]},"min_height_tablet":{"unit":"px","size":"","sizes":[]},"min_height_mobile":{"unit":"px","size":"","sizes":[]}}" data-widget_type="table-of-contents.default"> Table of Contents Introduction – Who is Leda Bresnov? Personal Experiences and Coping Strategies Treatment and Care in Denmark Challenges and Support Systems in Denmark Education, Awareness, and Advocacy Quickfire Q&A Session Farewell Introduction – Who is Leda Bresnov? Born and raised in Brazil, moved to Denmark in1991 to live with my husband.Together we have a daughter aged 23, a son aged 19, two dogs and a cat. I have a background as a laboratory technician and worked for the same company for 16 years, before the NMO. Finally, what message of hope or encouragement would you like to share with individuals living with NMOSD or MOGAD in Denmark? It is possible to have a good, meaningful life with NMOSD. How and where can interested people find you online? Email: ledabresnov@gmail.com On Facebook, Instagram, LinkedIn, X (Twitter), TikTok as Leda Bresnov. --- Thank you very muh hfor all your efforts and being so active on social media Leda to get other people inspired and become active and to increase the awareness for NMOSD. 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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  8. ٢٩ ربيع الأول

    Navigating Treatment and Support for MS, NMOSD, and MOGAD in Montenegro with Dr. Sanja Gluscevic

    Dr. Sanja V. Gluscevic, a neurologist from Montenegro, specializes in MS, NMOSD and MOGAD, and is dedicated to patient care and advocacy. You can read all questions and answers on my blog: https://ms-perspektive.com/81-sanja-gluscevic Today I would like to introduce you to Dr. Sanja V. Gluscevic, a renowned neurologist who specializes in multiple sclerosis (MS) as well as other inflammatory diseases of the central nervous system and epilepsy. Hailing from Podgorica, the capital of Montenegro, Dr. Gluscevic has built her impressive career with dedication and passion to improve the lives of patients with neurological disorders. With extensive training and experience in leading medical centers, as well as her active involvement in international organizations and her own NGO, Dr. Gluscevic is not only an expert in her field, but also a passionate advocate for the education and support of patients with MS, NMOSD and MOGAD worldwide. Learn more about her personal motivation, her professional achievements and her efforts to raise awareness of brain diseases in Montenegro. Be inspired by her story, her knowledge and her tireless dedication to making a difference in the lives of people with MS. "},"minimize_box":"yes","minimized_on":"tablet","hierarchical_view":"yes","min_height":{"unit":"px","size":"","sizes":[]},"min_height_tablet":{"unit":"px","size":"","sizes":[]},"min_height_mobile":{"unit":"px","size":"","sizes":[]}}" data-widget_type="table-of-contents.default"> Table of Contents Introduction – Who is Dr. Sanja V. Gluscevic? Prevalence and Awareness of MS, NMOSD and MOGAD in Montenegro Quality of Life for MS, NMOSD and MOGAD Patients in Montenegro Access to Treatment and Support Services for MS, NMOSD and MOGAD Patients Social Support and Coping Mechanisms The Sumaira Foundation Quickfire Q&A Session Farewell Introduction – Who is Dr. Sanja V. Gluscevic? Hello Nele. Thank you very much for your kind invitation to participate in your esteemed podcast today. I am a neurologist specializing in MS, other inflammatory disorders of central nervous system and epilepsy. I come from Podgorica, the capital of Montenegro, a small and picturesque country in the Balkans, with approximately 620.000 inhabitants. I have completed my residency and fellowship training in epilepsy and clinical neurophysiology at the University of Belgrade, Medical School. During my tenure there, I had the privilege of learning from eminent figures in the realms of multiple sclerosis and epilepsy including professor Jelena Drulović, professor Šarlota Mesaroš, professor Dragoslav Sokić and professor Aleksandar J. Ristić. Currently I am engaged in the pursuit of my master’s degree in MS at the European Charcot Foundation (where I also serve as vice- chair of ECF young investigator/fellow) and PhD thesis in epilepsy at the University of Montenegro. I have also recently been appointed as a first Montenegrin ambassador of neurology and brain health by European academy of neurology (EAN). I am also honored to serve as the ambassador for The Sumaira Foundation, which, in my view, stands as the premier organization worldwide for NMOSD and MOGAD. The palpable engagement, energy, affection, and unwavering support within this vast and diverse community make it the epitome of a unified and inclusive family dedicated to these rare conditions.  Beyond my personal endeavors, I take immense pride in fulfilling roles as a mother, a spouse, and a devoted owner of Russian wolfhound.  My passion for exploring diverse cultures through travel is unwavering, and I find solace and inspiration in tranquil nature walks accompanied by classical and rock music, depending on a mood, while delving into the depths of literature exploring the intricacies of human behavior from psychological and neuroscientific perspective.   Finally, what message of hope or encouragement would you like to share with

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حول

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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