Episodios

  • #070: Teriflunomide (Aubagio) for relapsing remitting MS
    Jul 17 2024
    Teriflunomide (Aubagio) is approved as disease-modifying therapy for mild to moderate RRMS from 10 years of age. You can find the full article to read on my blog: https://ms-perspektive.com/70-teriflunomide This time it’s about teriflunomide, which is known under the trade name Aubagio. The immunotherapy is used for mild to moderate courses of relapsing forms of MS. Teriflunomide also has a broader mechanism of action and is one of the immunomodulating drugs. Please remember that I can only provide an overview here. Ask your neurologist and MS nurse for detailed advice on choosing the right therapy for you. They should know your complete state of health and be aware of your goals, wishes, fears and preferences. <\/path><\/svg>"},"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 General Information How is teriflunomide (Aubagio and generics) classified in immunotherapies? What is teriflunomide (Aubagio) approved for? What is the situation for special patient groups? Who should avoid teriflunomide? How does teriflunomide works? How is it taken? How effective is teriflunomide (Aubagio and generics)? Risks and side effects of teriflunomide (Aubagio and generics) Vaccinations Sources Final note Sources I used the following sources to create the content: Quality manual of the KKNMS on teriflunomide (Aubagio)MS-Selfie Infocards by Prof. Dr. Gavin Giovannoni German Multiple Sclerosis and Fertility Registry (DMSKW) Information from the German interview with Prof. Dr. Barbara Kornek on pediatric MS DMSG information on teriflunomideDECIMS information on teriflunomide Final note Please remember, there is no one great medication that helps everyone, but it must always be weighed up what suits a particular person best. Other illnesses, personal goals and preferences must also be taken into account. Your neurologist and MS nurse are the right persons to talk to and can make individual recommendations. This article is for information purposes only and does not constitute a recommendation. What helps one person may not help another. I hope that, together with your neurologist and MS nurse, you will quickly find the right immunotherapy for you. And that you can lead a fulfilled, happy and self-determined life with MS, supported by a healthy lifestyle and a dose of fortune. --- You may also want to look at the posts on the other DMTs: Dimethyl fumarate (Tecfidera) and diroximel fumarate (Vumerity)Glatiramer acetate (Copaxone, Brabio)Interferon-beta (Avonex, Betaferon, Extavia, Plegridy, Rebif) 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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    19 m
  • #069: Beyond Boundaries. Advocacy, Research, and Recognition in MS with Rachel Horne
    Jul 10 2024
    MS patient and advocate Rachel Horne sponsors a prize for women in MS research and campaigns for more diversity in clinical trials. You can read all questions and answers on my blog: https://ms-perspektive.com/69-rachel-horne Rachel Horne was diagnosed with multiple sclerosis at the age of 43, when she felt fit and healthy. She established the Rachel Horne Award to raise the visibility of women in MS research. The selection is made by a number of volunteers from International Women in MS according to clear criteria. Rachel also advocates for a more diverse group of study participants in clinical trials. This could help to find the right treatment for each individual MS patient, regardless of age, gender, ethnicity or co-morbidities. The greater the diversity of the study population, the better it is possible to assess effects and find out who benefits most and who does not. <\/path><\/svg>"},"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 Rachel Horne? Personal Experiences and Coping Strategies Rachel Horne Prize for Women's Research in MS Exploring the Influence of Gender and Ethnicity Patient Advocate Activities Quickfire Q&A Session Farewell Introduction - Who is Rachel Horne? My name is Rachel. I was born in Canada and have lived in the UK for more than 30 years. I was diagnosed with MS in 2009 – about 15 years ago. I am married and have two adult children. Hobbies – I have to say reading! Finally, what message of hope or encouragement would you like to share with individuals living with MS? I think it is so easy to forget that treatment into MS is a neurological success story. We now have over 20 drugs to treat our disease. People are living longer, better lives with the disease. The days of ‘diagnose and adios” are gone… though I am aware there are many countries in the world where this is not so. How and where can interested people find you online? I am on X (formerly Twitter): @RachelHorne19 --- Thanks to Rachel for all her efforts in making the world more diverse and balanced, 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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    1 h
  • #068: Interferon-beta (Avonex, Betaferon, Extavia, Plegridy, Rebif, …) for CIS, RRMS & SPMS
    Jul 3 2024
    Interferon-beta (Avonex, Betaferon, Extavia, Plegrid,y Rebif) is used as a disease-modifying therapy for mild to moderate RRMS, CIS & SPMS. You can find the full article to read on my blog: https://ms-perspektive.com/068-interferons In today’s article, I present interferon-beta, which include several active substances and are known as Avonex, Betaferon, Extavia, Plegridy, Rebif, or under other trade names. They are all approved disease-modifying drugs for relapsing forms of MS. They are used for mild and moderate courses of the disease. Like glatiramer acetate and fumarates, which have already been presented, interferons have a broader mechanism of action. In the following, I will try to provide a good overview without delving into all the details. And as always: seek advice from MS specialists who know your individual situation, your wishes, your fears and your general state of health. <\/path><\/svg>"},"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 General Information How are interferon-beta (Avonex, Betaferon, Extavia, Plegridy, Rebif, and generics) classified in immunotherapies? What is interferon-beta approved for? What is the situation for special patient groups? Who should avoid interferon-beta? How does interferon-beta works? How is it taken? How effective is interferon-beta (Avonex, Betaferon, Extavia, Plegridy, Rebif, and generics)? Risks and side effects of interferon-beta (Avonex, Betaferon, Extavia, Plegridy, Rebif and generics) Vaccinations Sources Final note Sources I used the following sources to create the content: Quality manual of the KKNMS on interferon-betaMS-Selfie Infocards by Prof. Dr. Gavin Giovannoni German Multiple Sclerosis and Fertility Registry (DMSKW) Information from the German interview with Prof. Dr. Barbara Kornek on pediatric MS DMSG information on interferon-betaDECIMS information on interferon-beta Final note Please remember, there is no one great medication that helps everyone, but it must always be weighed up what suits a particular person best. Other illnesses, personal goals and preferences must also be taken into account. Your neurologist and MS nurse are the right persons to talk to and can make individual recommendations. This article is for information purposes only and does not constitute a recommendation. What helps one person may not help another. I hope that, together with your neurologist and MS nurse, you will quickly find the right immunotherapy for you. And that you can lead a fulfilled, happy and self-determined life with MS, supported by a healthy lifestyle and a dose of fortune. --- You may also want to look at the posts on the other DMTs: Dimethyl fumarate (Tecfidera) and diroximel fumarate (Vumerity)Glatiramer acetate (Copaxone, Brabio) 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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    22 m
  • #067: MS Speech Therapy Insights. Enhancing Communication and Swallowing
    Jun 26 2024
    Discover how speech therapists can address often overlooked MS-related swallowing and communication disorders for timely intervention. You can find the written version to read on my blog: https://ms-perspektive.com/67-speech-therapy Swallowing and speech disorders usually play a subordinate role in the perception of patients. However, problems with swallowing occur in up to 40% and with speech in around 75% of all MS patients during the course of the disease. This episode is about how you can recognize that there is a problem and, above all, what you can do about it. After all, eating and drinking as well as socializing with other people are among the absolute basic needs. A speech therapist can help you to learn how to swallow or speak again. You can find out more in the article. <\/path><\/svg>"},"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 When do swallowing and speech disorders occur? How do swallowing and speech disorders manifest themselves in multiple sclerosis? What triggers lead to swallowing and speech disorders? What tests are carried out to make the diagnosis? Effects of MS-related swallowing and speech disorders What can you do yourself to treat swallowing and speech disorders? How can speech therapy help you with MS-related swallowing and speech disorders? Is there medication for swallowing and speech disorders in multiple sclerosis? What other options are available? What is the best prevention against swallowing and speech disorders in MS? Food for thought Question for you Food for thought If you occasionally have slight problems with swallowing or speaking that you didn’t have before, then simply get it checked by a specialist, be it your neurologist or a speech therapist. It is almost always the case that early intervention leads to a better prognosis. Question for you Have you ever had problems with swallowing or speaking? And was there possibly a connection to multiple sclerosis? --- Maybe you are interested in the other articles about MS symptoms: Finding Joy Again. Navigating MS-Related Sexual DysfunctionOvercoming MS Sleep Challenges for Restful Nights and Brighter Days.Depression and MS. How to find your way back to emotional balanceLiving Fully with MS. Managing Bladder and Bowel DisordersMS Symptom Pain. How to regain your quality of lifeSpasticity in MS – far more than normal muscle crampsMovement restrictions in MS – how to maintain your strength, balance and mobility in the best possible wayClearing the Fog – Understanding Vision Problems in Multiple SclerosisCognitive disorders in MS – when the mind goes on strike 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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    16 m
  • #066: Pioneering Paths. Empowering Young Minds in MS & NMO Research with Dr. Sara Samadzadeh
    Jun 19 2024
    Dr. Sara Samadzadeh contributes to research in the field of NMOSD and MS by creating networks between young researchers worldwide. You can find all questions and answers as well as all links on the blog article: https://ms-perspektive.com/066-sara-samadzadeh Multiple sclerosis and NMOSD have made tremendous advances in treatment due to research conducted over the past decades. Nevertheless, there is still much to be done. It is therefore all the more important that this area of neurology continues to attract young, committed and motivated scientists who contribute their own ideas and network with each other. Dr. Sara Samadzadeh is one of these young scientists. As President of the European Charcot Foundation Young Investigators, she promotes initiatives such as women in research and faster diagnosis in Iran, her home country. She is also an ambassador for the Sumaira Foundation, which campaigns for NMO and MOGAD patients. Find out more in the interview. <\/path><\/svg>"},"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. Sara Samadzadeh? European Charcot Foundation Young Investigators Sumaira Foundation Ambassador Quickfire Q&A Session Farewell Introduction – Who is Dr. Sara Samadzadeh? Hi, thank you so much for having me today, and congratulations on your wonderfully friendly, informative, and unique podcast. My name is Sara, and I am a medical doctor and I have clinical neurology training in my background. I have started on a PhD/Postdoc pathway in neuroimmunology and neuro-ophthalmology at Southern Denmark University, in collaboration with Charité University Hospital and Research Center. I am originally from Tehran, the capital city of Iran, I am currently residing in the beautiful city of Berlin. I moved to Germany about 6-7 years ago, initially settling in Southern Germany. I had the privilege of working at Düsseldorf University Hospital under the guidance of Prof. Peter Hartung and Prof. Meuth in the MS field, and then with Prof. Friedemann Paul. I have a passion for learning languages and enjoy networking with different cultures. My travels and life experiences span over 40 countries, including living in several of them for extended periods. Aside from my professional pursuits, I love engaging in sports, particularly jogging and running in nature. My favorite spot at the moment is the Tiergarten in Berlin. Finally, what message of hope or encouragement would you like to share with the listeners? To everyone living with MS and NMO spectrum diseases, please hold onto hope. Every day, we are witnessing and contributing to new breakthroughs in the scientific understanding and treatment of these complex conditions. Through dedicated research, we are constantly uncovering more about the underlying mechanisms of these diseases and developing innovative treatments that promise better outcomes. Remember, you are not alone in this journey. There is a vibrant global community of researchers, clinicians, healthcare providers, and fellow patients all united in their commitment to fight these diseases. Together, we are working tirelessly to push the boundaries of what’s possible in medical science and patient care. As we look to the future, let us remain optimistic and proactive. Continued advancements are on the horizon, driven by our collective efforts and the shared goal of significantly improving the lives of all of you. Your strength, courage, and stories inspire us every day, and they reinforce the importance of our work. Together, we will continue to make strides toward more effective treatments and, ultimately, cures for these conditions. Empower, Engage, Overcome: Together for a Stronger MS Community How and where can interested people follow your research activities? Interested individuals can follow my research activities and updates through my publications on academic platforms, presentations at conferences, or on professional social media profiles such as LinkedIn and ResearchGate. (Instagram social activities and professional activities) https://www.researchgate.net/profile/Sara-Samadzadeh https://www.linkedin.com/in/sara-samadzadeh-21895965/?originalSubdomain=de https://scholar.google.com/citations?user=FeK7rcsAAAAJ&hl=en Sara Samadzadeh (@SaraSamsS20Ss) Sara.leia.sam (Instagram account) --- A big thank you to Sara for her dedication and efforts that ultimately benefit patients through better care, patient-centered work and motivated scientists in the field of MS and 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 ...
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    49 m
  • #065: Glatiramer Acetate (Copaxone, Brabio) for relapsing remitting multiple sclerosis
    Jun 12 2024
    Glatiramer Acetate, brand names Copaxone and Brabio, belongs to the oldest immunotherapies for relapsing remitting multiple sclerosis. You can find the written version of this episode on my blog: https://ms-perspektive.com/065-glatiramer-acetate This time I am presenting glatiramer acetate, which is known as Copaxone, Brabio or other tradenames and is one of the approved disease-modifying drugs for relapsing forms of MS. It was one of the first drugs to be approved as a preventive therapy for MS patients and was an accidental discovery. Originally intended to induce MS in mice for research purposes, it was suddenly discovered to have a protective effect. Like the fumarates already presented, it has a more broad-based mechanism of action. I will try to give a good overview below without going into absolute depth. And as always, please seek specific advice from MS specialists who know your individual situation, wishes, fears and overall state of health. <\/path><\/svg>"},"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 General Information How is glatiramer acetate (Copaxone, Brabio) classified in immunotherapies? What is glatiramer acetate (Copaxone, Brabio) approved for? What is the situation for special patient groups? Who should avoid glatiramer acetate (Copaxone, Brabio)? How does glatiramer acetate (Copaxone, Brabio) work? How is it taken? How effective is glatiramer acetate (Copaxone, Brabio)? Risks and side effects of glatiramer acetate (Copaxone, Brabio) Vaccinations Sources Final note Sources I used the following sources to create the content: Lecture on glatiramer acetate (Copaxone and generics) by Prof. Tjalf Ziemssen as part of the Multiple Sclerosis Management master programQuality manual of the KKNMS on glatiramer acetateMS-Selfie Infocards by Prof. Dr. Gavin Giovannoni German Multiple Sclerosis and Fertility Registry (DMSKW) Information from the German interview with Prof. Dr. Barbara Kornek on pediatric MS Final note Please remember, there is no one great medication that helps everyone, but it must always be weighed up what suits a particular person best. Other illnesses, personal goals and preferences must also be taken into account. Your neurologist and MS nurse are the right persons to talk to and can make individual recommendations. This article is for information purposes only and does not constitute a recommendation. What helps one person may not help another. I hope that, together with your neurologist and MS nurse, you will quickly find the right immunotherapy for you. And that you can lead a fulfilled, happy and self-determined life with MS, supported by a healthy lifestyle and a dose of fortune. --- 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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    19 m
  • #064: Navigating MS Treatment in Turkey with Neurologist and Associate Professor Meral Seferoglu
    Jun 5 2024
    Dr. Meral Seferoglu gives an insight into the treatment of MS in Turkey and how she uses her expertise to support patients. You can read all questions and answers on my blog: https://ms-perspektive.com/64-meral-seferoglu This time I have Dr. Meral Seferoglu as an interview guest on the show and we talk about MS treatment in Turkey. It’s always interesting to hear about other countries and how they deal with this chronic disease. I am really impressed by the number of rehabilitation days per year that a person with MS can access in Turkey. Rehab is so important to overcome the challenges of multiple sclerosis and live the best life possible. Learn more and enjoy the interview with Dr. Meral Seferoglu from Bursa, Turkey. <\/path><\/svg>"},"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 Associate Professor Dr. Meral Seferoglu? Prevalence and Awareness of MS in Turkey Quality of Life for MS Patients in Turkey Access to Treatment and Support Services Social Support and Coping Mechanisms Multiple Sclerosis Management Master program Quickfire Q&A Session Farewell Introduction – Who is Associate Professor Dr. Meral Seferoglu? Hi thank you for your invitation. I always like to listen podcast on spotify during my way to work. While I saw your LinkedIn profile also start to listen your podcast series. Congratulations for this podcast series. I think it touches many lives far from Germany. It is my pleasure to be here. I am a neurologist focusing on demiyelinating disorders. Married and have two children and a cat. I like reading books, walking, swimming and painting. Finally, what message of hope or encouragement would you like to share with the listeners? „Dear MS patients, I wish for you to spend each day with hope and strength. MS may present challenges but remember that your resilience and determination are greater. Together, in solidarity, we can overcome every difficulty. Look to the future with hope, because science and support are advancing every day. You are strong, you are valuable” How and where can interested people follow your research activities? I have an Instagram and linked-in account on my name, also with our MS hospital team we have an Instagram page for MS patients: MSYolculugum --- Thank you for all your efforts for MS patients and for giving us an insight into the treatment of multiple sclerosis in Turkey. 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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    29 m
  • #063: Finding Joy Again. Navigating MS-Related Sexual Dysfunction
    May 29 2024
    Sexual dysfunction is common in multiple sclerosis. However, there are many ways to overcome them and enjoy intimacy again. You can find the written version of the episode on my blog: https://ms-perspektive.com/63-sexual-dysfunction Sex can be one of the best things in life and sexual dysfunction can therefore cause a lot of frustration. In this article, you will learn about the background and manifestations, what you can do about it and what role your personal attitude towards the topic plays. First of all, when it comes to sexual disorders – talking is key. And of course, it’s not just MS patients who have difficulties with this, but the majority of people. Which is a shame, because fears, desires, feelings and fantasies should not be taboo. And open communication can expand the playing field of possibilities and pleasures immensely. If a woman tells her husband that she no longer has the energy for sex in the evenings due to fatigue, there may be times at the weekend or in the morning when it is possible and it is no longer the supposed lack of interest that is unspoken, but a concrete problem for which solutions can be found together. The same applies to men with MS who suffer from erectile dysfunction. Once it is clear that both sides want to continue having affection and that the only thing standing in the way is the fear of not being able to function, possible solutions immediately appear on the scene, from oral sex and mutual masturbation to sex toys. So much is possible and everything can be solved if you talk about it. <\/path><\/svg>"},"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 Cotents How often do sexual disorders occur? What types of sexual disorders exist? Which doctors can help you? What can you do yourself if you have sexual disorders? Why time and tenderness are so important. What medication and aids are available to treat sexual disorders? What is the best prevention against sexual disorders? Food for thought Question for you A preliminary note I’m always referring to couples in the classic sense here. But of course there are also other constellations for having sex. And my formulations are in no way judgmental. The same applies to gender. Diversity and equality are wonderful and all genders are always explicitly meant, even if not formulated. Question for you Do you talk openly with your partner about your fears, wishes, worries and what you like? Or do you find this difficult? And if you find it difficult, how could you change it and what would be a first step in this direction? --- Thank you for listening. I hope it wasn’t unpleasant for you. Because I think it’s important to talk clearly about love and lust so that your quality of life remains high, and for most people intimacy is part of that. And if I had used a lot of paraphrases, my message would have been difficult to understand. So be aware that there is a solution for pretty much everything as long as you talk about it. 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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    17 m