Shows
MS-Perspektive - der Multiple Sklerose PodcastVerborgene Herausforderungen – Schwelende MS verstehen mit Prof. Gavin Giovannoni👉 Blogbeitrag zur Folge: https://www.ms-perspektive.de/309-gavin-giovannoni Kurzbeschreibung: In Folge 309 spreche ich mit Prof. Gavin Giovannoni, einem der weltweit führenden Experten für Multiple Sklerose, über das Konzept der "schwelenden MS" (smouldering MS). Prof. Giovannoni erklärt, warum traditionelle Klassifikationen wie RRMS, SPMS und PPMS zunehmend in Frage gestellt werden und wie ein neues Verständnis von MS zu besseren Therapien führen kann. Das Interview wurde ursprünglich auf Englisch geführt und liegt hier in deutscher Übersetzung vor. Highlights der Episode: Wer ist Prof. Gavin Giovannoni? Was genau be...
2025-06-1657 min
MS-Perspektive - The Multiple Sclerosis PodcastHidden Challenges – Exploring Smoldering MS with Prof. Gavin GiovannoniProf. Gavin Giovannoni explores the complexities of multiple sclerosis, the concept of "smoldering MS," and future treatment strategies. You can find the full transcript of the interview to read on my blog: https://ms-perspektive.com/95-smoldering-ms Welcome to today's interview, in which I am accompanied by one of the most influential personalities in the field of multiple sclerosis, Prof. Gavin Giovannoni. Prof. Giovannoni is a renowned neurologist at the Royal London Hospital and a professor at Queen Mary University in London. Originally from South Africa, he has dedicated his career to understanding, treating and advancing...
2025-01-081h 03
BeewellwithMS podcast by Dr Agne StraukieneExploring Smouldering MS: Insights and Innovations with Prof. Gavin Giovannoni and Prof. Jeremy HobartExploring Smouldering MS: Insights and Innovations with Prof. Gavin Giovannoni and Prof. Jeremy HobartThis episode of 'BeeWellwithMS' features an exclusive session from a webinar in the Southwest of England, hosted by dr Agne Straukiene with guest speakers: Professor Gavin Giovannoni and Professor Jeremy Hobart. They delve into groundbreaking concepts like smouldering MS, brain neuroplasticity, and innovative approaches to MS care and treatment. The discussion highlights how smouldering MS impacts disability progression, explores gaps in MS services, and considers future advancements including new drugs and potential vaccines. Emphasising the importance of lifestyle changes, combined treatment approaches, and early...
2025-01-0157 min
MS-SelfieQ&A 55: Should I have a third course of cladribine?This is a free preview of a paid episode. To hear more, visit gavingiovannoni.substack.comCaseI am a 27-year-old female student with relapsing-remitting MS treated with oral cladribine four years ago. I recently graduated from university with a BSc. I am currently studying for a master's. I have remained stable on MRI scans but continue to have difficulty walking. I understand that cladribine is an induction therapy, meaning that further treatment is not usually required after two courses. How effective is a third course of cladribine (Mavenclad) in halting disease progression?...
2024-10-2402 min
MS-SelfieDehydration and bladder functionDehydration is not a good way to control your bladder symptoms.Almost 30 years ago, while doing my PhD on a urine biomarker of inflammation, I noted that urinary concentration of creatinine, a muscle metabolite excreted in the urine, correlated with disability. I soon worked out that people with MS with worse disability (higher EDSS) were more likely to have bladder dysfunction and were dehydrating themselves to manage urinary frequency, urgency and nocturia. As I asked my study subjects to collect daily urine samples, it became clear that these people with MS (pwMS) were not intermittently dehydrating themselves...
2023-12-2113 min
MS-SelfiePrinciples underpinning the treatment of MSCase studyDear Professor GiovannoniMy 17-year-old son has just been diagnosed with multiple sclerosis. As you can imagine, as a parent, I am very concerned about his long-term future. His neurologist has recommended he start fingolimod without much discussion about other treatment options. Is there any advice you can give about the underlying principles of treating MS in young people? Prof G’s OpinionAs I have said before, how MS is managed and treated worldwide is variable and depends on local practices and guidelines. I suspect your son has bee...
2023-10-1801 min
MS-SelfieThe Murray Bornstein Memorial LectureI gave the annual Murray Bornstein Multiple Sclerosis Memorial Lecture at Dartmouth College on Friday. Murray B. Bornstein (22 November 1917 - 31 August 1995) was the principal investigator on the original COP-1 trial that eventually led to the licensing of glatiramer acetate (Copaxone) as a treatment for MS. I never met Murray Bornstein, but it is worth noting that the original COP-1 paper was published in August 1987 three months before I graduated from medical school and long before I had decided to become a neurologist. Bornstein et al. A pilot trial of Cop 1 in exacerbating-remitting multiple sclerosis. N E...
2023-10-0413 min
MS-SelfieIs there a need for MS self-management flowcharts or algorithms?I have just returned from my summer holiday, where I had time to reflect and think about multiple sclerosis research, the practice of neurology and managing multiple sclerosis. We are at a crossroads where things are changing rapidly, mainly driven by developments in information technology. Over the next few weeks, I will cover these issues in more detail, in particular (1) the most exciting current MS research, (2) changes in the practice of neurology that will impact the diagnosis and management of MS, and (3) the unmet need in the management of MS. Catching up with some journal reading this m...
2023-09-1111 min
MS-SelfieMultiple sclerosis and seizuresCase studyHow common are seizures in MS? I developed seizures about a year after diagnosis. Prof G’s opinionSeizures and epilepsy (recurrent seizures) are relatively common in people with MS. The reason why MS causes seizures is that MS is also a grey matter disease and involves the cortex or surface of the brain. MS lesions in the cortex are thought to irritate nerve cells to fire spontaneously, which results in seizures. When these seizures are recurrent, the person, by definition, has epilepsy (recurrent unprovoked seizures). The supe...
2023-08-2916 min
MS-SelfieTo cure or not to cure MS, that is the questionEveryone is excited that licensed disease-modifying therapies (DMTs) reduce the risk of developing MS when started in patients with radiologically isolated syndrome (RIS). This has now been shown for DMF (dimethyl fumarate, Tecfidera) and teriflunomide (Aubagio). These trials have changed very little in my thinking about MS. I expected them to be positive. RIS is MS; therefore, if DMF and teriflunomide work in MS, they will work in RIS.The concept that people with RIS do not have MS remains mainstream and is bizarre. MS is a biological disease and not a clinico-radiological construct, which is how...
2023-08-2419 min
MS-SelfieDo you suffer from restless legs syndrome?Case studyDear Prof GI have secondary progressive multiple sclerosis and suffer from restless legs, preventing me from sleeping well. It takes me ages to fall asleep, and I wake up regularly. I nerve wake feeling refreshed. Is there anything you can do to help? I have had MS for over 20 years, and my mobility is severely limited. I can walk 30 to 50 metres with two sticks and use a wheelchair outdoors. Prof G’s opinionIn my experience, restless leg syndrome (RLS) in people with MS is a bit of a dumping ground reg...
2023-08-2320 min
MS-SelfieGum disease and MSCase studyI saw a 56-year-old male with primary progressive MS several years ago. He had been diagnosed about three years earlier and had gone from a mild limp to needing a walking stick in just over three years. When I examined him, I noticed he had halitosis due to poor oral hygiene and severe periodontal disease. He was a heavy smoker, common in people with periodontal disease. I referred him to the dentist. Unfortunately, his periodontitis was so severe he had to have all his teeth extracted and was fitted with dentures. After having his teeth...
2023-08-2115 min
MS-SelfieOnychogryphosisCase studySeveral months ago, I saw a patient with advanced multiple sclerosis (MS) who had been having increasing difficulty with mobilising and had taken to wearing slippers to shuffle between their wheelchair and their bed or toilet. They complained about painful feet. When I got them onto the examination couch and looked at their feet, they clearly had onychogryphosis. Prof G’s CommentaryOnychogryphosis is overgrown and neglected toenails. I had to refer this patient to their local podiatry service. Hopefully, they will have regular appointments to have their toenails cut and the...
2023-08-1006 min
MS-SelfieDoes burnt out MS exist?Case studyI saw a 46-year-old man with MS today in my clinic who has secondary progressive MS and is on siponimod (Mayzent). He has previously been failed by interferon-beta and fingolimod, and despite being on siponimod, he continues to notice a gradual worsening of his walking and early involvement of his right hand with loss of dexterity; he is having difficulty doing delicate motor tasks involving both hands (bimanual tasks). He questioned whether or not siponimod was working, considering he had been on fingolimod in the past. He also asked if MS could ever burn itself...
2023-08-0814 min
MS-SelfieMultiple sclerosis recognised as a global problemReflections of an ageing MS expertInnovation and the resultant changes from its adoption always seem slow when you judge them year to year. But not so when you look back over a decade or more. Shortly after I arrived in London in 1993, the pivotal interferon-beta-1b relapsing-remitting MS trial results were announced; the rest is history. Interferon-beta was not the first therapy to be shown to modify the course of multiple sclerosis (MS), but it became the first licensed treatment, which changed everything. The reception of the interferon-beta was a muted affair, at...
2023-07-3118 min
MS-SelfieWhat has a scrubbing brush got to do with multiple sclerosis?It has been 30 years since I arrived in London from South Africa to do a PhD on the immunology of MS. My research was on soluble biomarkers of inflammation in spinal fluid, blood and urine. I ended up doing my PhD on a single inflammatory biomarker called neopterin. Many of the ideas and hypotheses I formulated in the neuroimmunology laboratory between 1993 and 1996 are still as relevant today as they were 30 years ago. One of the central hypotheses I promoted, and still do, is that the oligoclonal immunoglobulin response or OCBs (oligoclonal bands) in the cerebrospinal f...
2023-07-2614 min
MS-SelfieCase study: facial twitching as a first manifestation of MSCase studyA few months ago, I saw a patient in her mid-forties for a second opinion. She had been diagnosed with primary progressive MS after presenting with a progressive right foot drop that had gotten worse over the last four years, and the weakness had now spread to the left leg and had started to affect her right hand. She also had bladder and bowel problems and sexual dysfunction. On history, she mentioned that about 18 years ago, she had an episode of facial muscle twitching that involved her eyelid and cheek. She described it as a...
2023-07-2411 min
MS-SelfieNHS strikes: implications for the future management of MSI was asked this morning why I was at work; shouldn’t I be on strike? However, as I work for a University, I am a clinical academic; as a group weren’t balloted and hence we don’t have a legal right to strike. The reasons for NHS consultants striking are very well rehearsed and laid out in this open letter to Steve Barclay, Secretary of State for Health and Social Care, by the consultant body at University Hospitals Dorset. Do you agree with them? Race to the BottomWhat the medical and healthcare communit...
2023-07-2019 min
MS-SelfieYellow fever vaccinationCase StudyDear GavinI booked to go on holiday to a country in Africa with a high incidence of yellow fever. When I went to get my travel vaccinations, I was told, in no uncertain terms, that I should abandon my trip since it was highly likely that the yellow fever vaccine I had in 2005 would no longer be active since I am on immunosuppressant drug for MS.A large part of my life has been travelling, quite often as an ambassador of a global charity. I am despondent that I will...
2023-07-1214 min
MS-SelfieMS-Related IntertrigoCase studyProf G, I am 56 years old with an EDSS of 8.0, and I keep getting skin infections in my groin area. I have repeated courses of antibiotics, but the infections keep returning. When I get infections, the odour is horrendous. What can I do? Prof G’s opinionThis patient is describing intertrigo. Intertrigo is a superficial inflammatory condition of the skin and occurs in areas where the skin rubs on the skin. Intertrigo typically occurs in the groin, armpits, under the breasts, and between skin folds. The latter usually occurs in peo...
2023-07-0716 min
MS-SelfieHappy 75th Birthday NHSToday is the 75th anniversary of the founding of the NHS. At 75, you are meant to be wise and full of sage advice. Unfortunately, the NHS finds itself underfunded, understaffed and in crisis. Many staff spend their days fighting fires, moving from one crisis to the next and often get through the day with the feeling that they could have done better. The question many commentators are asking is whether the NHS will survive. Very few people I know, except a handful of rampant neoliberals, disagree with the founding principles of the NHS that healthcare is a b...
2023-07-0521 min
MS-SelfieHow is your gut health?I recently saw NHS data on unplanned or emergency hospital admissions for people with multiple sclerosis in our five hospitals that constitute Bart Health NHS Trust. At the top of the list were gastrointestinal problems, with faecal impaction being the most likely culprit. This is tragic as faecal impaction is preventable and potentially has knock-on consequences for people with MS. Many people with multiple sclerosis (MS) seem content to live with chronic constipation, i.e. it becomes part of their new normal. Ideally, pwMS should have a bowel action daily or at least 3-4x times per w...
2023-07-0313 min
MS-SelfieMS self-management (MS-Selfie) micrositeDear MS-Selfie Reader, Listener and SubscriberI want to thank paying subscribers and people who have kindly donated money to MS-Selfie. The MS-Selfie microsite is now up and running. The site allows you to access information from the Newsletters via a simple-to-navigate index, and its search function is much better than the search function on MS Selfie itself. The writing is also easier to understand. Please register on the site to get important updates. You can register by clicking on this QR code or using the QR code to visit the registration page. Please be a...
2023-06-3002 min
MS-SelfieCNS resilience in progression of MSCase studyProf G, have you seen today’s news that MS progression may be due to genetic factors? What does it mean for someone like me who was recently diagnosed with secondary progressive MS? I am about to transition from dimethyl fumarate to siponimod. I am waiting for my genetic tests to return to see if I can take the drug. Does this mean siponimod won’t work in slowing down my MS? Prof G’s opinionThe observation that subtle genetic variations in your genome are associated with MS severity is not sur...
2023-06-2925 min
MS-SelfieThe annual MS follow-up consultationI have had several people with MS write to me about how unsatisfactory their annual follow-up consultation is. I suspect the short and incomplete annual assessments are part of a broader problem in the NHS related to understaffing and an increasing number of people with MS. Another aspect is that as pwMS get more educated about having MS and living with its consequences, they are expecting more from their MS services including more time with their MS neurologist and MS nurse specialist. More than fifteen minutes is needed for an annual follow-up appointment. Do you agree? These ar...
2023-06-2623 min
MS-SelfieManaging expectationsDuring the development, subsequent licensing and use of therapies for more advanced MS, I repeatedly made the point that the MS community must manage expectations, i.e. what is a realistic expectation for people on these therapies. It is clear we have not done so and that people with MS (pwMS) are disappointed with these therapies' impact on advanced (aka progressive) MS. More and more patients are getting angry with me that they are still getting worse despite being on treatment. Every week I have to deal with disappointment from broken promises based on over-hyped expectations. The following is a...
2023-06-2008 min
MS-SelfieNutraceuticals: what is the state of play in MS?Nutraceuticals is a term used to describe any product derived from food sources with potential extra health benefits over-and-above of the basic nutritional value found in the product. I am mentioning this because I spoke to a group of people with MS and their families at the Chilterns MS Centre on the weekend, and my slide on the holistic management of MS mentioned potential nutraceuticals. Unlike pharmaceuticals, the main problem with nutraceuticals is that they are mainly unregulated; hence, we don’t have a sound evidence base to recommend their use as treatments for MS. Despite this, the...
2023-06-1916 min
MS-SelfieIs it ethical to use teriflunomide as an active comparator in phase 3 trials?HistoryIt seems like it was only yesterday when we started to debate the ethics of doing placebo-controlled phase 3 trials in multiple sclerosis (MS). The debate started shortly after interferon-beta and glatiramer acetate had been licensed as treatments for relapsing-remitting MS. The justification for continuing to do placebo-controlled trials was based on inequity, i.e. not everyone had access to a licensed treatment, and some people with MS were needle-phobic and wouldn’t agree to an injectable therapy. This rationale allowed the development of natalizumab, fingolimod, oral cladribine, dimethyl fumarate, teriflunomide and daclizumab. However, once wid...
2023-06-1424 min
MS-Selfie#MSConnections: have you connected with Barbellion?International MS DayToday’s MS-Selfie Newsletter is to commemorate International MS Day (30 May). The theme this year is ‘connections’. MS Connections is about building community connections, self-connection and connections to quality care. Social isolation and lonelinessI have finally started reading ‘The Journal of a Disappointed Man’ by WNP Barbellion. It was recommended to me more than a decade ago. It is a remarkable read and tells you first-hand how bad multiple sclerosis can be if left to its own devices. It is a story of decline and failed ambition, not for lack of try...
2023-05-3020 min
MS-SelfieIs shared-decision making dead?Case studyDear Prof. GiovannoniI have been recently diagnosed with MS and was offered diroximel fumarate (Vumerity), ofatumumab (Kesimpta) and ocrelizumab (Ocrevus). After reading about these three DMTs, I have settled on ocrelizumab (Ocrevus). However, after reading more about MS and several of your newsletters, I would prefer to be treated with alemtuzumab or cladribine. Why was I not offered these? My consultant prides herself on promoting shared-decision making. How can decision-making be shared if these two options are unavailable to me? Prof. G’s opinionI suspect your MS was...
2023-05-2219 min
MS-SelfieHow important is the diagnosis and management of infectious mono?More frustration - infectious mononucleosis (IM) care will become more fragmented because local community-based pharmacists will now manage many patients with sore throats. As you know, I have been a proponent of Epstein Barr Virus (EBV) being the cause of MS for over 20 years. I have stuck to my guns despite a sceptical MS community. It is not for lack of trying, but there has been very little research funding in this area, which I hope will change with the recent epidemiological evidence strengthening the causal link between EBV and MS. Many of the hypotheses we...
2023-05-1715 min
MS-SelfieBeyond the B-cell - an alternative treatment paradigm for MSCase studyDear Professor GiovannoniI don’t live in the UK but would appreciate your advice. I was diagnosed with MS in late 2018 and was started on ocrelizumab soon after diagnosis. I am now 53 years of age, and I am quite concerned about staying on ocrelizumab. My immunoglobulin levels are now low, and my neurologist wants me to switch therapies. I have done well on ocrelizumab. I have had no relapses since starting treatment and no new lesions on MRI. I want to stay on Ocrelizumab. What would you recommend? Prof G’s opi...
2023-05-0920 min
MS-SelfieAAN 2023: what is the greatest unmet need in MS?I was asked a question during one of the sessions at AAN 2023 about what I thought the greatest unmet need is in multiple sclerosis. My answer was, ‘It depends on your worldview’. #1. PreventionWearing a public health hat, the greatest global impact has to be MS prevention. Preventing or reducing the risk of someone getting MS in the future is the holy grail of MS. I think we are closer to achieving this than we think. I give an effective EBV vaccine programme a greater than 80% chance of doing this. If we don’t try, we won’t...
2023-04-2712 min
MS-SelfieShould I switch from ocrelizumab to ofatumumab?Case studyMy MS clinical nurse specialist has suggested I switch from ocrelizumab to ofatumumab. She reckons ofatumumab is safer than ocrelizumab. Apparently, it will make me more independent of the increasing problem of finding suitable NHS infusion slots as I can self-administer the drug myself in monthly injections. I have been on ocrelizumab for close to three years. Two quick questions. Firstly, is she correct; is ofatumumab safer than ocrelizumab? Secondly, I note that on the MS-Selfie Infocards, ofatumumab scores higher than ocrelizumab on relapses. Does this mean it is also more effective than ocrelizumab?
2023-04-1819 min
MS-SelfieProf G chastised for discussing the real MSI was at the MS Trust conference this week. I ran a seminar on MDTs (multi-disciplinary team) meetings for MS-related DMTs (disease-modifying therapies) and gave a talk in the final plenary session on smouldering MS. If you want, you can download my talks from my slide share site. Please feel free to hack the presentations and use them as you want. Building an effective MDT: roles, responsibilities, and ructionsThe MDT session went very well. It was decided that what we are talking about is not an MDT, in the way the term should be u...
2023-03-3113 min
MS-SelfieMultidisciplinary MS Team Meetings or MDTs: can we leverage them to 'Raise-the-Bar'?I am speaking at the MS Trust meeting next Tuesday on smouldering MS, and I am running a seminar on multidisciplinary MS team meetings (MDTs). For me to speak on smouldering MS is understandable it has been an issue I have been pushing for several years and is included in many of the media campaigns I am involved with (see list below). * #MS_is_1_not_2_or_3_diseases (MS is a biological disease, not a clinico-radiological construct)* #ThinkCognition (cognition is a very important domain in MS and should be considered as part of our tr...
2023-03-2404 min
MS-SelfieWhy is Prof G so disheartened?I was at an international multiple sclerosis meeting on the weekend, and we used a virtual board game to teach healthcare professionals (HCPs) about clinical decision-making in relation to DMTs. It was surprising and disheartening to hear many of the attendees fail to include alemtuzumab or AHSCT (autologous haemopoietic stem cell transplant) in their decision-making. Many attendees were surprised when I stated ‘that if I were their patient, I would expect them to include alemtuzumab and AHSCT as potential treatment options’. By the look on their faces, they thought I must be deranged. Don’t they know alemtuzu...
2023-03-2008 min
MS-SelfieInfo cards for making decision about DMTsOne of my favourite reads is the bimonthly ‘New Philosopher’. The latest issue concerns distraction and the crisis of information overload. At the same time, there has been a switch from physical objects, for example, books, to online resources such as podcasts, audiobooks, apps, etc. Feedback from many pwMS, informally in one-on-one discussions, via surveys and focus groups, is that they are overloaded with online resources and smartphone apps and would prefer something physical. Something to touch and play with. To counteract this, I asked Safiya Zaloum, one of our very bright and highly-motivated medical students, to produ...
2023-03-1307 min
MS-SelfieDiagnosing MS: what to expect?Case studyI am 22 years old, and I think I may have multiple sclerosis (MS). I had an episode when my right arm was clumsy and numb. It recovered spontaneously. I am due to see a neurologist next week. What should I expect? Prof G’s Opinion I don’t know what you should expect because the practice of neurology and medicine is quite variable and differs worldwide. I could only say what you would expect if you saw me. Yes, you may have MS, but MS is a clinical diagnosis and a d...
2023-03-1021 min
MS-SelfieCase study: gaslit for mentioning smouldering MSCase studyDear Professor Giovannoni I am 36 years of age, and I have had multiple sclerosis for just over four years. I started ocrelizumab early; three weeks after being diagnosed. I am told that my disease is in remission. However, I have noticed that I am still fatigued, and my memory and cognition are worsening. I am sure I have a smouldering MS. When I bring this up with my neurologist, he ignores me and is not prepared to accept the concept of smouldering MS. My neurologist refuses to do additional tests to diagnose smouldering M...
2023-03-0813 min
MS-SelfieSudden death in MS is very very rareImportant noticeThis newsletter comes with a health warning as it discusses the issue of death in people with multiple sclerosis. I believe you should be aware of this information as it helps balance the risks and benefits of treating MS and the dangers of untreated MS. It also shows how DMTs are changing the long-term outcome of MS. I think the overall message should be a positive one in that in the modern era, if we treat MS early and effectively we will prevent or delay the downstream consequences of MS. Case study
2023-02-1813 min
MS-SelfieSmouldering MS - a new trialWe need your help. As you know, one of the biggest unmet needs in multiple sclerosis is modifying smouldering disease. Is there anything we can add to your existing disease-modifying therapy to try and slow down the worsening of your disability? Smouldering MS, and by implication progressive disease, is present from the earliest stages of MS. I believe that people with MS (pwMS) need to be told about smouldering MS. The need to be made aware that, in general, current DMTs are designed to suppress focal inflammatory activity and not necessarily the smouldering component of MS...
2023-02-1709 min
MS-SelfieMaking the case for AHSCT being first-lineLast week I spoke at “The 3rd International Symposium on Stem Cell Treatment in Multiple Sclerosis”, which was held at the Sheffield Institute for Translational Neuroscience (SITraN) (download programme here). I was tasked with making a case for using autologous stem cell transplantation (AHSCT) in treatment-naive patients. To do this, I had to make the case of patient choice and to shared-decision making, or at a minimum, guided-decision making, to allow people with MS the option of being offered AHSCT as a treatment, and potentially as a first-line treatment. I also had to expose the many cognitive biase...
2023-01-2510 min
MS-SelfieThe management of MS in the futureI was invited to give a keynote lecture to a group of MS neurologists last week. The following is an adaptation of the talk for MS-Selfie subscribers. In it I discuss the future of MS management. I would be interested to know if you think I am being too ambitious and whether or not you agree. The talk is quite scientific, but I have tried to make it understandable for people with no scientific background. Please feel free to ask questions if you don’t understand anything. I have also uploaded a PowerPoint version of my slides th...
2023-01-1601 min
BeewellwithMS podcast by Dr Agne StraukieneMastering MS Management with Prof. Gavin GiovannoniGet ready for an inspiring and insightful episode of BewellwithMS podcast! Join host dr Agne Straukiene as she sits down with the world-renowned Neurologist, Prof Gavin Giovannoni, to discuss the latest updates in MS diagnostic criteria and how it affects the MS community. With over a few decades of experience in the MS field, Prof Giovannoni is an expert in his field, and his insights are invaluable.In this episode, we dive deep into the importance of the proposed new framework for defining different types of multiple sclerosis, and why it is crucial for MS patients to be aware of...
2023-01-1252 min
MS-SelfieEBV immunotherapy for MS: glofitamab inductionI have difficulty seeing future multiple sclerosis research (MS) outside the EBV-MS hypothesis. I have become a prisoner of my rigid thinking. It has been clear to me for decades that EBV is the primary cause of MS. It is not the only risk factor, but it is necessary. This point is critical in that if you don’t have EBV, you can’t get MS. This underpins the primary prevention strategy of a population-based vaccine to prevent primary EBV infection, which will protect people from getting MS and other EBV-associated diseases. However, for people who al...
2023-01-1122 min
MS-SelfieSTAR-MS: AHSCT as a first-line therapy for MSCarpe diem - seize the dayI have recently been contacted by several patients in Scotland and England wanting to be treated with AHSCT (autologous haematopoietic stem cell therapy). Some patients have been told AHSCT is not available as a treatment option for MS in Scotland. In contrast, some English patients have been told that their consultants don’t support AHSCT as it is too risky. One patient was not even given the option of alemtuzumab; her consultant said they had stopped using alemtuzumab because of the associated risks. ScotlandI told the Scot...
2023-01-0913 min
MS-SelfieAttack MSAre you reporting all your relapses? If you don’t, it could have consequences. Case studyThe problem of not reporting and documenting relapses is an issue for people living with MS (pwMS). I saw a patient nine years ago who probably had MS for at least six years. He was diagnosed with a clinically-isolated syndrome (CIS) after presenting with the MS hug (tight constriction band around the chest), loss of feeling from the waist down, and weakness in the legs. He had an abnormal brain MRI and a positive spinal fluid analysis when he pres...
2023-01-0517 min
MS-SelfieHip pain in people with MSCase studyI am a 39-year-old male with multiple sclerosis who was treated with interferon-beta before having two courses of alemtuzumab. It was about three months after the second course that I developed right hip pain and, two months after that, left hip pain. After an MRI of my hips, my orthopaedic surgeon diagnosed me with bilateral avascular necrosis (AVN) of the hip. Apparently, the high-dose steroids I was given to prevent alemtuzumab-related infusion reactions are responsible. As it has been many months since developing AVN, I will now have to have bilateral hip replacements. I was...
2022-12-1510 min
MS-SelfieSt Elsewhere Hospital - delayed MS diagnosisCase studyA young woman recently diagnosed with multiple sclerosis contacted me for legal advice. She initially presented in 2012 with optic neuritis. Her MRI was abnormal, and she was told she might develop MS. She was not offered repeat imaging and was told to return if she developed new neurological symptoms. She then went on to have a prodromal syndrome over the next ten years with chronic fatigue, intermittent abdominal pain and urinary symptoms, which were put down to co-morbid endometriosis. She was seen in 2018 and had an MRI of her spine and was told t...
2022-12-0916 min
MS-SelfieInappropriate laughing and cryingCase studyWhen I met her for the first time, she was in her early fifties. She had had multiple sclerosis for over 20 years. Her family now kept her at home, isolated from the wider world. Her behaviour would embarrass them. Why? She suffered from pathological laughter and occasionally inappropriate crying; her husband and children could not deal with this in public. She was clearly very disabled when I met her in the clinic; she was unsteady on her feet and had slurred speech and dancing eyes from cerebellar problems. She had gross cognitive impairment. W...
2022-11-3006 min
MS-SelfieFlasbacks - PTSDLast week - thank youI did two MS roadshows last week when I went out to speak to people with MS (pwMS) in their local community. On Wednesday night, I was in Stanmore, North London, and on Saturday morning, I went to Aylesbury, in the Chilterns. I want to thank all the attendees who asked about my health. Yes, I'm fine and have made as good a physical recovery as possible. I still have weakness and clawing of my left hand from damage to the nerves in my neck. I have a painful neck w...
2022-11-0710 min
MS-SelfieIs your MS salvageable?Case studyDear Prof Giovannoni, I am not sure if you remember me. I was your patient when you worked at the National Hospital for Neurology and Neurosurgery. I have been in a wheelchair for over seven years and have spasticity in my legs and severe bladder and bowel problems. I am now being looked after by my local hospital. Prof G’s opinionThe above story is a familiar one of a patient with advanced MS being lost to follow-up by a specialist MS centre and being managed locally by a general ne...
2022-11-0312 min
MS-SelfieECTRIMS 2022 - highlightsI have just arrived back from ECTRIMS 2022 in Amsterdam and have reflected on a week of meetings. I had little time to view abstracts and/or attend live sessions. I am hoping to catch up with missed content using the on-demand service. Despite this, I managed to get an overview of what is important from discussions with friends and colleagues. 1. EBVEBV remains, in my opinion, on top of the pops. The good news is that almost all of the pharmaceutical companies I spoke to are now including EBV in their long-term thinking. Some companies ar...
2022-10-3121 min
MS-SelfieECTRIMS 2022 - initial thoughtsI arrived last night in Amsterdam for this year’s ECTRIMS meeting. Our first real face-to-face meeting of MS researchers and HCPs in three years. I am giving several talks and poster presentations. However, I will spend most of this ECTRIMS having meetings. Yes, this happens at conferences; it is all about networking and is why international travel to conferences will continue despite the large environmental impact.EBVIt is clear that since arriving and speaking to colleagues, the buzz around EBV has not decreased. Saying this, the programme does not include much new work on...
2022-10-2508 min
MS-SelfieEBV & MS - repeating oneself is often a good thingI did an interview yesterday for a documentary about the causal role of EBV in multiple sclerosis. Despite writing and talking about this issue extensively, I was asked what pivotal questions/experiments need to be answered/done, who will be doing them, and how much the research will cost. I promised to put my thoughts down in writing. I apologise for repeating myself, but sometimes you must repeat yourself to get the message across. Q1: Does EBV vaccination to prevent infectious mononucleosis (IM) prevent or reduce the incidence of multiple sclerosis and other EBV-related disorders?T...
2022-10-1915 min
MS-SelfieMultiple sclerosis with a near-normal MRICase studyI saw a patient with possible MS a year or two ago. He had been told that he couldn't have MS because he only had one lesion on his MRI, which was equivocal. However, when I took a history and examined this patient, he had evidence of dissemination in time and space. He had had a previous episode of facial weakness that had been put down to Bell’s palsy several years ago. The Bell’s palsy had been considered to be unrelated to his current problems. More recently, he had an episode of vertigo and...
2022-10-1113 min
MS-SelfieBrain Health: how important is it?Are you ahead of the curve? When I attended the European Association of Neurologists (EAN) meeting in June this year, there was a massive focus on Brain Health and the neurologist's role in promoting this concept. This coincides with the WHOs position paper on “Optimizing brain health across the life course: WHO position paper” (9-Aug-2022). We in the MS community discussed this issue a decade ago, and I launched the first MS brain health challenge in 2016. Yes, I think we were ahead of the curve.MS Brain HealthIn 2014 I was conta...
2022-10-0619 min
MS-SelfieHow strong is your pelvic floor?I spend a large chunk of my clinic time helping sort out bladder problems. This is why there are so many newsletters on the topic. One of the treatments recommended to all patients with bladder problems is pelvic floor exercises (PFE). However, I have recently been asking patients if their continence advisors have formally instructed them on how to do PFE. Most patients respond by saying they were given an instruction sheet or referred to the NHS pelvic floor exercise online or other online resources. What is clear is how few people have been adhering to the PFE regimen; I...
2022-09-2605 min
MS-SelfieThe MS-Selfie logoI was asked this week about the design of the MS-Selfie logo. Subscribers who have been with the Newsletter for a long time may recall me asking you for your opinion about different versions of the logo when I was doodling with the design. However, I never told you about the meaning of the design. I hope the following diagram explains it all and addresses the question. Subscriptions and donationsPaid subscriptions to MS-Selfie are being used to administer the Newsletter and associated MS-Selfie microsite currently in development. At the request of several readers, I...
2022-09-2304 min
MS-SelfieHow to interpret a urine dipstick resultQuestionProf G, I have been using urine dipstick monitoring as you have recommended, but how do I interpret the results?Interpretation of dipstick resultsThe primary reason for starting MS-Selfie was to provide you with the information to self-manage your MS. I have written an earlier Newsletter (Infection 29-Jun-2021)on the use of home dipstick monitoring for the early detection of urinary tract infections (UTIs), so they can be treated early to prevent symptomatic infection or complications such as pyelonephritis (kidney infection) and septicaemia. Please be aware that septicaemia from UTIs is...
2022-09-2213 min
MS-SelfieIs primary progressive MS a different disease?A question from one of the readersCan you please explain why you think primary progressive multiple sclerosis (PPMS) is not different to relapsing-remitting MS (RRMS) or secondary progressive MS (SPMS)? And what has sliced salami got to do with the classification of MS?Prof G’s ResponseI may be repeating myself, but it needs to be said over and over again. A lot of people simply accept that (1) PPMS is non-inflammatory, (2) that people with PPMS don’t have relapses and (3) PPMS is a different disease from relapse-onset MS.Dogma 1: PPMS...
2022-09-2012 min
MS-SelfieThe Perfect StormThe following is a list of some of the issues I was going to discuss at a symposium at the MS at the Limits meeting next Monday. This symposium has now been cancelled, although the actual meeting is still going ahead, because of Queen Elizabeth’s funeral on Monday. You need to be aware of these issues to understand the pressures on the NHS. I suspect these pressures are not unique to the UK and affect other healthcare systems. * Epidemiology of multiple sclerosis (MS)* Increasing incidence of MS (more patients)* Patients living longer
2022-09-1416 min
MS-SelfieMore evidence that EBV causes MSI don’t usually cover hardcore research and immunology on MS-Selfie. However, in the survey I did earlier this year, you specifically asked for research updates I surmised that you want to hear about basic research, particularly when it is potentially relevant to MS therapies and future MS research. As you know, I am convinced that EBV is the cause of MS, so I am running a social media campaign under the hashtag #EBVcausesMS. Currently, there are two main competing theories of how EBV causes MS. On the one hand is the hit-and-run theory that EBV triggers aut...
2022-09-0622 min
MS-SelfieTinnitus: don't always blame MSCase studyA 29-year male with multiple sclerosis was booked into an emergency outpatient slot for a relapse assessment to have steroids. A week before, he woke with a ringing sound in his left ear (we refer to this symptom as tinnitus*). Over the next 5-10 minutes, he lost hearing in the left ear and developed severe vertigo and projectile vomiting. The vertigo was so severe he was unable to walk. He contacted his GP, who asked him to contact the neurology team at our hospital. The neurology trainee who spoke to him over the phone diagnosed...
2022-08-3112 min
MS-SelfieMedical gaslightingCase studyDear Prof G,Whenever I see my neurologist, he seems to fob me off as if I don’t have any problem. He disagrees with me when I tell him that my MS is getting worse. He tells me that I can’t be getting worse as my MRI is stable and my neuro exam is unchanged. He doesn’t believe me when I tell him that I am more forgetful and that my fatigue is affecting the quality of my work. Is there anything I can do about this? Prof G’s opi...
2022-08-2206 min
MS-SelfieReflections: setting priorities for MSApologies for being almost incommunicado for the last two weeks. I have been away on holiday. I tried to avoid daily work, i.e. checking and responding to emails, social media, reading medical journals, correcting manuscripts, etc., which is why I have been relatively quiet on the MS-Selfie front. The break allowed me to read some very good books, spend needed time with my family and allow time for reflection and some deep thinking. It is clear to me that the field of MS needs a paradigm shift away from the current model if we are going t...
2022-08-1508 min
MS-SelfieFalls: is there anything that can be done to help?Case studyI am a 48 years old woman with secondary progressive multiple sclerosis. I was diagnosed 22 years ago and was initially treated with interferon-beta (Rebif) for 12 years but stopped it when I moved back to the UK from Australia. I have not had an obvious relapse since starting Rebif. My last MRI scan before the COVID-19 pandemic did not show any new lesions. My main problems are (1) dragging of my left leg and a left foot drop, which causes me to trip and fall frequently, (2) bladder problems with recurrent urinary tract infections and nocturia, and (3) bowel urgency w...
2022-07-2713 min
MS-SelfieCOVID-19 update - BA5The lived experienceHaving just recovered from my first bout of COVID-19, I now have the lived experience of what it is like to have COVID-19, albeit a mild infection, and its profound fatigue. At the peak of my infection, I experienced ‘cog-fog’ and the associated consequences of not being able to focus on the task at hand, never mind multitasking and getting through a long ToDo list. Another issue having COVID-19 has highlighted is that when you are ill and working and self-isolating at home, most organisations, including the NHS, expect you to continue worki...
2022-07-2013 min
MS-SelfieHeat - what to do?My thoughts are for people with MS, including all my patients, who have to live through and cope with this latest heatwave. The BBC is reporting that the UK is likely to record its hottest day, either today or tomorrow. “An amber warning for extreme heat has begun for England and parts of Wales as the UK braces for record temperatures. The Met Office warning extends to southern Scotland on Monday and Tuesday, when England's alert rises to red for the first time. … The heat could hit 41C on Monday, which would be a record for th...
2022-07-1813 min
MS-SelfieCog-fog and fatigueCase study (n=1 or n = me)I am day 4 into my first bout of COVID-19 and it is no joke. Although I only have a sore throat and mild cold-like symptoms the fatigue and cog-fog are something else. Any physical effort results in tachycardia and a feeling of profound exhaustion. I am having difficulty working, which for me is essential. I had to do two small virtual online clinics and chair an online meeting on EBV and MS, which floored me. My attention and concentration are limited to short bursts of activity, not to mention m...
2022-07-0909 min
MS-SelfieCase study: oscillopsia or jumpy visionCase studyI have had MS for 18 years and I am now quite disabled. I am very unsteady on my feet with frequent falls. I now have to use a walker or Zimmer frame to try and prevent myself from falling backwards. Unfortunately, I fractured my left humerus last year as a result of a fall. Since then my mobility has deteriorated further. I also have tremors in both hands that prevent me from drinking out of a glass or cup and I now have to use a double-handled closed mug with a straw. I also need...
2022-07-0606 min
MS-SelfieEBV antivirals to treat MSCan natalizumab be used to prove that EBV is the driver of MS disease activity? Natalizumab works by blocking the trafficking of immune cells into the central nervous system (CNS). The current dogma states that these immune cells are what actually causes MS and by preventing them from getting into the CNS you stop MS. The other hypothesis, which is the one that I favour, is that MS is caused by EBV and it is the replication of EBV in the CNS that causes MS. EBV lies dormant in B-cells and it is the infected B...
2022-06-3011 min
MS-SelfieCrossword puzzle #2As nobody got the #1 crossword puzzle correct I prepared a second one, which is designed around a case scenario to teach you about how multiple sclerosis may affect visual function in someone with a previous attack of optic neuritis. The participants who submit the correct answers for the crossword and provide a valid contact address will go into a draw to a Lego MRI set.A 24-year-old woman with a previous attack of right optic neuritis notices that …1-down … she often knocks her mug of tea over and that she sees a swinging pendulum in 3D (x, y and...
2022-06-2204 min
MS-SelfieWhy is natalizumab not licensed to treat progressive MS?I am not sure if you are tired of hearing about ‘the real MS’ or smouldering MS, but the study below provides you with some hope. A post-hoc analysis of the natalizumab secondary progressive or ASCEND trial shows that chronic MS lesion activity is associated with disability worsening. This is not a novel finding and builds on other evidence that chronic active lesions, which include slowly expanding lesions (SELs), cause tissue destruction and predict poor outcomes. What is a new finding is that natalizumab has an impact, albeit small, on these chronic active lesions, including SELs, and indica...
2022-06-1713 min
MS-SelfieMS-Selfie CrosswordThis is an experiment. I am adding a regular crossword puzzle to MS-Selfie as a new feature to try and make learning about MS more fun. The participants who submit the correct answers for the crossword and provide a valid contact address will go into a draw to win a prize; a Lego MRI set.There is a method to my madness in that making you think about the answers to the crossword is good for your brain health. Yes, people in the general population who do crossword puzzles regularly are at lower risk of getting dementia...
2022-06-1503 min
MS-SelfieGrit: do you have what it takes?Arguably one of the most overused terms to emerge during the COVID-19 pandemic has been the term resilience. Journalists and commentators have used the noun ‘resilience’ or the adjective ‘resilient’ when referring to countries, political, educational and healthcare systems, healthcare professionals and individuals with chronic diseases. These terms are even creeping into biology, for example, (1) his metabolic resilience protected him from developing diabetes and metabolic syndrome; (2) the resilience of the nervous system and its ability to recover function means the onset of the progressive phase of MS will be delayed by several years. Resilience /rɪˈzɪlɪəns/nounthe capa...
2022-06-0812 min
MS-SelfieTime matters: should British people with MS accept sup-optimal care?Nothing is hidden. If you look carefully, you will find all you need to find. In the study of newly diagnosed Scottish patients with MS, close to 40% had hidden disabilities such as depression, anxiety, fatigue, sleep disturbance, cognitive impairment and pain. Are these MS-related problems really hidden? Yes, hidden from the eye but detectable by simply asking the right questions and assessing the function of the nervous system using standard techniques. A remarkable 26% of subjects were on antidepressants, 18% were unemployed, 36% had motor difficulties, 36% had balance, incoordination, double vision or swallowing problems and 12% had bladder or bowel problems a...
2022-05-1811 min
MS-SelfieCase study: how much brain have you lost?Case studyProf G, my neurologist, refuses to tell me if I have brain atrophy or not. He says the neuroradiologists don’t measure it, and even if they did, we can’t use it to make treatment decisions. Do you agree?Prof G’s opinionYes, and no. Yes, in the sense that an individual patient level brain volume (BVL) measurements are quite wobbly or variable. At the moment, a change in BVL over a 12 month period may simply be within the range of the variability of the measurement and will no...
2022-05-1413 min
MS-SelfieCan you have a relapse affecting the same site?Case studyProf G, can you have a relapse affecting the same site? I was diagnosed with MS 15 years ago. I was initially treated with interferon-beta-1a (Rebif) and was switched to fingolimod 8 years ago. Once or twice a year, I get recurrent pins and needles in my left arm, which start in the shoulder and radiate into my thumb and index finger. The pins and needles are accompanied by a burning sensation in the arm and clumsiness of the hand. These symptoms typically come on for about two or three days and resolve spontaneously. O...
2022-05-0507 min
MS-SelfieWhat is my neurofilament level doing?The reason why rheumatologists are ahead of us in treating rheumatoid arthritis (RA) and protecting joints (the RA end-organ) is that they have an inflammatory biomarker that is closely linked to outcome, it is called the C-reactive protein (CRP), which they include as part of their treatment target. They also include a PROM (patient-related outcome measure) as part of the DAS (disease activity score); this not only involves RA patients in their treatment but gives patients with RA a deeper understanding of what DMARDs (Disease-Modifying Anti-Rheumatic Drugs) are and what they do to their disease. If you h...
2022-04-2514 min
MS-SelfieWaist-to-height ratio, metabolic health and MSI am giving a talk this Friday on treating MS beyond NEIDA (no inflammatory disease activity) and I am contemplating what I need to focus the talk on. I am considering making the talk about a healthy lifestyle, which is probably the most effective preventive health intervention we have. Study 1 below shows that you can increase your chances, by a factor of over 20, of a life expectancy free of diabetes, cardiovascular diseases, and cancer at age 50 by making ensuring you maintain 4 or 5 low-risk lifestyle factors; i.e. not smoking, staying trim, doing moderate to vigorous physical activity, ke...
2022-04-2010 min
MS-SelfieMS biohackers bewareBiohacking is often described as a citizen or do-it-yourself biology. For many biohackers with MS, this consists of making dietary or lifestyle changes to try and make small improvements to your health and well-being. However, more recently MS biohackers have become active in sourcing off-label medications, which are usually prescription-only medications (PoM), in the hope of them improving long-term MS outcomes. The two most commonly sourced biohacking PoMs that I have seen being used in real-life are simvastatin and metformin.Simvastatin is being used to try and slow down smouldering MS in people with more advanced MS a...
2022-04-1111 min
MS-SelfieCase study: Copaxone, menstruation and the menopauseCase studyI was on glatiramer acetate (Copaxone) for around 3 years until 2016 - at age 51. After having a regular menstrual cycle for over 30 years, from the month I first started Copaxone until the month after I stopped Copaxone, my menstrual cycle completely stopped. Out of curiosity, during that time, I ceased Copaxone for a few days, I did this probably 3 times over the 3 years. Each time I did this it triggered a period.With menopause on the horizon, I became concerned about the long term effects of Copaxone stopping my periods. My neurologist denied the...
2022-04-0611 min
MS-SelfieWhy did subcutaneous natalizumab (Tysabri) get rejected by the FDA?As natalizumab’s or Tysabri’s patent is about to expire Biogen the company that market’s the product has launched a new subcutaneous (SC) formulation and now have a very active marketing campaign to get us to switch our patients from the IV formulation to the SC formulation. Their argument is that moving from a 60-minute intravenous infusion to two subcutaneous injections of 1mL each will save both the NHS and patient’s on natalizumab time. Another lever that Biogen is pulling is that have said they will be withdrawing all nursing support for natalizumab infusions across th...
2022-03-2619 min
MS-SelfieNeurological stress testsI have been running a campaign that #MS_is_1_not_2_or_3_diseases for sometime. This is based on the biology of MS and not what we see clinically. The pathology that underpins so-called progressive MS is the loss of axons, neurons and synapses. All three of these processes begin very early in the so-called asymptomatic stage of MS. What dictates whether or not we see the effects of these subtle changes depends on how much we stress the neurological system concerned and how much resilience, or reserve, this system has to handle the stress.A good example...
2022-03-2305 min
MS-SelfieThe retrospectoscopeMedicine and neurology are an art and not a science, which explains why one neurologist or MS centre may say one thing and a second or third neurologist will say something else. I am acutely aware this causes confusion and is very frustrating for many people with MS.“The practice of medicine is an art, not a trade; a calling, not a business; a calling in which your heart will be exercised equally with your head.” William OslerI recently saw a patient for a second opinion who has been on ocrelizumab for over two years...
2022-03-2108 min
MS-SelfieResearch: big data and smouldering MSDoes big data have the answers? The study below of over 27,000 people with multiple sclerosis (pwMS) and about 200,000 EDSS transitions tells us what we know already that relapses make only a small contribution to MS outcomes and this contribution is relatively early on in the disease. In other words, the real MS is smouldering MS or as measured in this study progression independent of relapses (PIRA). NOTE: Please remember that smouldering MS is more than PIRA. PIRA is what we can measure with the EDSS score (see figure below). Whereas smouldering MS refers to PIRA and other markers of o...
2022-02-0309 min
MS-SelfieCase study: why cladribine is the better option in this case than ocrelizumabCase studyI need your advice about CIN (cervical intraepithelial neoplasia) and ocrelizumab. I am in a tough situation, and I have been given different opinions from various specialists and I am confused about what to do.Unfortunately, I have an active HPV infection (type 52 and 6) on PCR. Fortunately, my cervical smear tests are all clear. Since reading your article I've been considering getting the Gardasil-9 vaccine before starting ocrelizumab. However, I am not sure I can delay ocrelizumab treatment as I have highly active MS with a poor prognostic profile. My baseline MRI in...
2022-01-2117 min
MS-SelfieMore evidence that EBV is the cause of MSCase studyDear Professor GiovannoniFirstly, thank you for your Newsletters. I find them very helpful and reassuring even if the ones on smouldering MS are frightening. I am 33 years old married woman and have two young children; a daughter who is 4 and a son who is 18 months old. I know my children are at increased risk of getting MS. You have convinced me that EBV is the cause of MS and I don’t want my children to get MS. Is there anything I can do to prevent them from bein...
2022-01-1307 min
10 Minutes For MSEp 26: Dr Gavin Giovannoni, Multiple Sclerosis and the available treatmentsWhile there’s no cure for multiple sclerosis (MS), there are many treatments available. These treatments mainly focus on slowing down the progression of the disease and managing symptoms.
In this episode of the Limited exclusive series of 10 minutes for MS podcast, Prof Gavin Giovannoni, one of the top global experts in multiple sclerosis (MS) give you a better understanding of the MS and the available treatments and well as the research landscape.
Prof. Giovannoni also talks us through neurodegeneration in MS and the unmet needs that still face patients, clinicians, and researchers.
2021-12-1232 min
MS-SelfieCase study: MRI-negative relapsesCase studyHi GavinRe: Smouldering disease and relapses without MRI activityTo me, the concept of smouldering disease makes sense with my MS, which still fully recovers. My EDSS is 1.5 and I am on ocrelizumab after failing alemtuzumab. Do many neurologists buy into the concept of smouldering MS? I feel like I am hitting walls when I mention that I feel I am getting worse and have had a small new relapse, with nothing on the MRI, and get looked at like it is just anxiety or I am making i...
2021-12-0211 min
MS-SelfieTeachNeuro: fingolimod reboundQuestion 1We know that some patients rebound when they discontinue fingolimod. When patients have clinical or radiological evidence of disease activity, and a clinical decision is made to escalate treatment, we wait until the patients have recovered from the lymphopenia. The patients don’t seem to relapse during this period of bridging? Is this correct?Question 2If the patient develops shingles or cryptococcus whilst on fingolimod, one would stop the fingolimod. However, this would put the patient at risk of relapse, is there a recommendation for bridging treatment? With shingles, when would you re...
2021-11-0913 min
Future Science GroupNCTalks with Gavin Giovannoni: advancements in the treatment landscape for multiple sclerosisNCTalks with Gavin Giovannoni: advancements in the treatment landscape for multiple sclerosis by Taylor & Francis Group
2020-05-1817 min
RealTalk MSClosing Out 2019 with Prof. Gavin GiovannoniIs MS preventable? Is progressive MS modifiable? We'll tackle these questions and more with my guest, Professor Gavin Giovannoni. Professor Giovannoni is not only a leading academic neurologist based at Barts and The London School of Medicine and Dentistry, Queen Mary University London, he's also a prolific blogger, tweeter, speaker, author, and opinion leader. It's a conversation you don't want to miss! We're also taking a look back at the major MS news stories of 2019. We're talking about new disease-modifying therapies, stem cell therapy (both the legitimate and the less-than-legitimate variety), MS biomarkers, the skyrocketing cost of MS...
2019-12-1739 min
Living Well with Multiple SclerosisResearch priorities in MS with Professor Gavin Giovannoni | S1E10Multiple Sclerosis is the focus of burgeoning medical research, which can seem like a scientific maze to the layperson. So on this episode of Living Well with MS, we are fortunate to have as our special guest one of the most qualified guides through the MS research labyrinth, Professor Gavin Giovannoni.
Professor Giovannoni is an academic neurologist based at Barts and The London School of Medicine and Dentistry, Queen Mary University London. His current research is focused on Epstein Barr virus as a possible cause of multiple sclerosis, MS-related neurodegeneration, biomarker discovery and validation, and M...
2019-10-0237 min
Multiple Sclerosis Discovery: The Podcast of the MS Discovery ForumMultiple Sclerosis Discovery -- Episode 58 with Dr. Gavin Giovannoni[intro music] Host – Dan Keller Hello, and welcome to Episode 58 of Multiple Sclerosis Discovery, the podcast of the MS Discovery Forum. I’m your host, Dan Keller. A group of people are calling for a big change in improving care for people with MS. There may be no cure for MS yet, but there are a lot of ways to improve their outcomes. In this podcast, one of the ringleaders, Dr. Gavin Giovannoni, talks about a new push to use long-term brain health as a goal in MS treatment. The new repo...
2015-10-2717 min
Multiple Sclerosis Discovery: The Podcast of the MS Discovery ForumMultiple Sclerosis Discovery -- Episode 56 with Dr. Gavin GiovannoniTranscript [intro music] Host – Dan Keller Hello, and welcome to Episode Fifty-Six of Multiple Sclerosis Discovery, the podcast of the MS Discovery Forum. I’m your host, Dan Keller. This week’s podcast features an interview with Dr. Gavin Giovannoni who discusses the first experimental drug to show some benefit in a progressive form of multiple sclerosis in a major trial. The drug is ocrelizumab, and the trial is called ORATORIO. But first, here are some new items in the MS Discovery Forum. The ocrelizumab findings were the big news a...
2015-10-1617 min
Multiple Sclerosis Discovery: The Podcast of the MS Discovery ForumMultiple Sclerosis Discovery -- Episode 14 with Professor Gavin Giovannoni[intro music] Host – Dan Keller Hello, and welcome to Episode Fourteen of Multiple Sclerosis Discovery, the podcast of the MS Discovery Forum. I’m your host, Dan Keller. This week’s podcast features part two of an interview with Professor Gavin Giovannoni about the role of Epstein-Barr virus in MS. But to begin, here is a brief summary of some of the latest developments on the MS Discovery Forum at msdiscovery.org. We've published a blog post from Christine Granfield, the founder of HealthCare Journey. Health...
2014-09-2917 min
Multiple Sclerosis Discovery: The Podcast of the MS Discovery ForumMultiple Sclerosis Discovery -- Episode 12 with Professor Gavin Giovannoni[intro music] Host – Dan Keller Hello, and welcome to Episode Twelve of Multiple Sclerosis Discovery, the podcast of the MS Discovery Forum. I’m your host, Dan Keller. This week’s podcast features an interview with Professor Gavin Giovannoni about the potential for finding a cure for MS. But to begin, here’s a brief summary of some of the latest developments on the MS Discovery Forum at msdiscovery.org. Monocytes and microglia are hard to tell apart and as a result, their roles are poorly u...
2014-09-1520 min