MS-Selfie

Case study How common are seizures in MS? I developed seizures about a year after diagnosis. Prof G’s opinion Seizures 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 spontaneousl...

Everyone 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 teriflun...

Case study Dear 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 out...

Case study I 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...

Case study Several 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 Commentary O...

Case study I 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 invo...

Reflections of an ageing MS expert Innovation 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...

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...

Case study A 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 histor...

I 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...

Case Study Dear Gavin I 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 travell...

Case study Prof 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 opinion This patient is describing intertrigo. Intertrigo is a superficial inflammatory condition of the skin and occurs in areas where the s...

Today 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 whe...

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 w...

Dear MS-Selfie Reader, Listener and Subscriber I 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 unders...

Case study Prof 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 o...

I 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 fr...

During 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 ar...

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.  Unli...

History It 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...

International MS Day Today’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 loneliness I have finally started reading ‘The Journal of a Disappointed Man’ by WNP Barbellion. It was recommended to me more than a de...

Case study Dear Prof. Giovannoni I 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...

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 r...

Case study Dear Professor Giovannoni I 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 r...

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. Prevention Wearing 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 achi...