My back story

My first exposure to MS was as a fourth-year medical student 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. She had MS and had been admitted with a relapse. Her main complaints were unsteadiness when walking and double vision on looking to the right. She had numerous other 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 enthused because she had so many clinical signs: a clinical treasure trove. She had problems with eye movements that 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. When 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 how to be empathetic at the bedside. I had not developed the skill to convey that I cared about her; I was only a medical student. At that point in time, my focus 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 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 most people with MS don’t cope with their disease at some point. 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 this lady again 18 months later, this time in the neurology ward. I had probably already decided to become a neurologist, having 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, with the first trial of interferon-beta. By injecting a recombinant form of interferon-beta under your skin every other day you could reduce the MS attack, or relapse, rate by one- third and reduce the number of MS lesions that come and go on MRI scans by over 70%. Although only moderately effective, the arrival of interferon-beta showed the world that MS could be treated, and it established MS as a new and very lucrative blockbuster drug market.

Interferon-beta opened the flood gates, and many new drugs have since been licensed to treat MS. Our understanding and aims of treatment have also shifted over this time. Some of us have changed 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. For every clinical attack, there are ten or more lesions (subclinical) 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 a person is eligible for treatment under the UK NHS or not; if you are already on a treatment, it may indicate you are not responding. Similarly, subclinical attacks that are apparent 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, but we now know from studying the brain after death that over half of the disease activity occurs in areas of the brain that can’t be seen with the MRI scans we use in day-to-day practice. Many 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 – symptoms that are often referred to as ‘hidden’; they lie below the surface. 

With new imaging techniques, we can see that the brains of people with MS are shrinking at 2–3 times the rate of normal brains. The good news is that a handful of highly effective MS treatments are showing promise in slowing this brain shrinkage. We are also seeing the clinical impact of these more effective treatments; people with MS starting these treatments are showing 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, “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 we are trying to reduce end-organ damage. 

If this woman with MS, who influenced my early career so much, came into my consulting room today, I would tell her a very different story, 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 the disease.