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Prof G's backstory: why he became an MSologist
If this woman with MS, who influenced my early career so much, came into my consulting room today, the story I would tell her would be a very different one; an inspiring story of innovation and hope.
I have been asked to add my biography to the MS-Selfie website. However, I realise that my official biography is very bland, which is why I want to give you some context and explain why I became a neurologist and subsequently specialised in multiple sclerosis. Please let me know which version you prefer.
My back story
The following is an update of a piece I wrote a few years ago to explain my first exposure to MS.
My first exposure to MS was as a fourth-year medical student way back in 1985. In fact, it was my first encounter with a real patient, which explains why it had such an indelible impact on me and is possibly the reason why I chose neurology and subsequently MS as my speciality.
The patient was a lady in her mid-forties. I entered her room apprehensively; I introduced myself and asked her if she minded being examined so that I could present her on a teaching round. Despite being exhausted she was accommodating and agreed to help. Her main complaints were unsteadiness when walking and double vision on looking to the right. She had MS and had been admitted with a relapse. She had a long story to tell and had numerous symptoms that included bladder problems, constipation, depression, anxiety, fatigue, back pain and restless legs that kept her awake at night. She was finding it difficult to manage her daily routine.
She had a musty odour of urine about her. She was incontinent; she couldn’t get to the toilet quickly enough to empty her bladder. Her bedclothes were damp and her sheets had the tell-tale signs of the problem. She was too tired to be embarrassed. When I examined her I got quite excited as she had so many clinical signs; a clinical treasure trove. She had problems with eye movements; her left eye couldn’t follow her right eye when attempting to look to the right. This caused double vision. She was unsteady on her feet and tended to drop things. She was weak in her legs and her sensory systems were failing. The sensors in her joints could not tell her brain where they were in space, which meant she would fall when she stood with her eyes closed or tried to walk in the dark.
As a medical student hungry for knowledge and experience, my clerking notes were a catalogue of a failing nervous system. After I had finished clerking her she asked me if I knew her son; he was in my medical school class. This was clearly a curved ball; when I reflect on this experience I realise now that I must have come across as brash and unsympathetic. I had yet to learn the skill of how to be empathetic at the bedside. I was not really in a position to let her know that I cared about her; I was only a medical student. At that point in time, the focus of my attention was not really her as a person but her neurological problems. I had yet to become a doctor.
Embarrassingly I did not know her son very well. This short exchange of personal details was the icebreaker. She broke down in tears and confided in me that she was not coping – I now know that the majority of people with MS don’t cope with their disease at some point in time. One of her biggest fears was that she would be unable to attend her son’s graduation. What struck me even back then was how debilitating and stressful the uncertainty of living with MS is. This is a lesson I have never forgotten.
I met her again 18 months later this time in the neurology ward. By this time I had probably already decided to become a neurologist as I had chosen to do an 8-week elective in neurology and neuroanatomy. She was now using a crutch indoors and a wheelchair outdoors. She had fallen and had broken her wrist. In less than two years she had gone from being mobile to needing a wheelchair. At my graduation I made a point of looking out for her; I never saw her, nor did I see a wheelchair.
In 1985 when I first met this lady there were no treatments for MS. This changed in 1993 when the first trial of interferon-beta showed that by injecting a recombinant form of interferon-beta, which is made in a bacterium, under your skin every other day you reduced the MS attack, or relapse, rate by a third and reduced the number of MS lesions that come and go on MRI scans by over 70%. Although only moderately effective the arrival of beta interferon showed the world that MS could be treated and established MS as a new and very lucrative blockbuster drug market.
Interferon-beta opened the flood gates and over the next 25 years, a whole raft of new drugs have been licensed to treat MS. In addition to new drugs, our understanding and aims of treatment have shifted over this period of time. Some of us have shifted our sights from simply reducing damage to preventing damage, with the hope of protecting the brain so that people with MS can age normally.
Most disease activity in MS occurs below the surface of the water, hence the iceberg analogy. For every clinical attack, there are ten or more lesions that can be seen to come and go on MRI. People with MS often don’t report symptoms compatible with a relapse; these undocumented relapses can be costly for the individual. The absolute number of relapses is important when deciding whether or not a person is eligible for treatment under the NHS and if you are on a treatment it may indicate you are not responding. Similarly, subclinical attacks which occur when new lesions are seen on MRI but are not associated with physical symptoms, also indicate the person is not responding to treatment. Current MRI imaging only detects large lesions and we now know from studying the brain after death that over half of the disease activity is occurring in areas of the brain that can’t be seen with the MRI scans we use in day-to-day practice. A large number of MRI-invisible lesions are found in the grey matter on the surface of the brain or cerebral cortex; these lesions are associated with cognitive deficits, depression, anxiety and fatigue. These symptoms are often referred to as hidden symptoms; they lie under the surface of the water.
With new imaging techniques, we can now see that the brains of people with MS are shrinking at 2-to-3 times the rate of normal brains. The good news is that a handful of highly effective MS treatments are showing promise and are able to slow this brain shrinkage. We are also seeing the clinical impact of these more effective treatments; people with MS going onto these treatments are coming back with improvements in their disabilities. Severe relapses are almost a thing of the past and the future is looking much rosier. We are beginning to ask the question “what does an MS cure look like?” and “how do we define an MS cure so that we can look for it?”. We are moving away from simply targeting inflammation and are trying to reduce end-organ damage; the pathology at the bottom of the MS Iceberg.
If this woman with MS, who influenced my early career so much, came into my consulting room today, the story I would tell her would be a very different one; an inspiring story of innovation and hope. I predict a future in which people with MS live healthy lives into old age free of disability and the worry that is such an integral part of living with MS.
My official biography
Gavin Giovannoni was appointed to the Chair of Neurology, Blizard Institute, Barts and The London School of Medicine and Dentistry, Queen Mary University London and the Department of Neurology, Barts Health NHS Trust in November 2006. Gavin did his undergraduate medical training at the University of the Witwatersrand, South Africa, where he graduated cum laude in 1987. He moved to the Institute of Neurology, Queen Square, London in 1993 after completing his specialist training in neurology in South Africa. After three years as a clinical research fellow, under Professor Ed Thompson, and then two years as the Scarfe Lecturer, working for Professor W. Ian McDonald, he was awarded a PhD in immunology from the University of London in 1998. He was appointed as a Clinical Senior Lecturer, Royal Free and University College Medical School, in 1998 and moved back to the Institute of Neurology, Queen Square in 1999. He was promoted to Reader in Neuroimmunology in 2004. His clinical interests are multiple sclerosis and other inflammatory disorders of the central nervous system. He is particularly interested in clinical issues related to optimising MS disease-modifying therapies. His current research is focused on the Epstein Barr virus as a possible cause of multiple sclerosis, defining the “multiple sclerosis endophenotype”, multiple sclerosis-related neurodegeneration or smouldering MS, multiple sclerosis biomarker discovery, multiple sclerosis clinical outcomes and in the past immune tolerance strategies. His team focus on translational research and therefore have an active clinical trial programme. Gavin is also an avid reader, blogger, runner and lover of technology. He has been involved in the development and validation of several innovations to communicate complex information to people with MS and their families (see ClinicSpeak, MS Brain Health and Digesting Science). Gavin has a vision of the future where patients and healthcare professionals will meet in a hybrid world that is transformed by technology.
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General Disclaimer: Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust. The advice is intended as general advice and should not be interpreted as being personal clinical advice. If you have problems please tell your own healthcare professional who will be able to help you.