MS-Selfie

Case study My 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. Firs...

I 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, responsibilit...

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,...

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 surprise...

One 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 ov...

Case study I 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...

Case study Dear 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...

Important notice This 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...

We 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...

Last 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-deci...

I 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 bac...

I 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 popula...

Carpe diem - seize  the day I 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 patien...

Are you reporting all your relapses? If you don’t, it could have consequences.   Case study The 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...

Case study I 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-dos...

Case study A 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 fa...

Case study When 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 disable...

Last week - thank you I 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...

Case study Dear 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 opinion The above story is a familiar one of a patient with adv...

I 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. EBV EBV remains, in my opinion, on top of the pop...

I 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 en...

I 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 repea...

Case study I 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 pal...

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 ag...

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...