What it’s really like living with MS
An ongoing battle against an incurable disease
“Manny was seventeen. In the same ward I had Gloria, who was sixty-seven. Manny was in a wheelchair and severely disabled, he could just about control his head when you gave him a drink. Gloria used to stroll in every few months for a few physical exercises. I thought to myself, how can this be the same condition?” says Joan Bradley, an MS Nurse at Hillingdon Hospital.
Multiple sclerosis (MS) occurs when your own immune system misidentifies the myelin sheath, a protective cover over your nerve fibres, as a foreign body, and attacks it. Symptoms of MS can vary hugely, but include optic neuritis [an inflammation of the optic nerve that leads to vision loss], fatigue, cognitive problems, and a lack of mobility that can be as severe as paralysis. The disease is believed to be caused by a combination of sunlight (vitamin D) deficiency and your genes.
In the relapsing-remitting stage of multiple sclerosis, symptoms come and go, though they can scar the myelin and leave lasting effects. In 65% of cases this type of MS will transform into secondary progressive, in which there will be no remittance, and the symptoms will get steadily worse over a patient’s lifetime.
There are around 100,000 people in the UK living with multiple sclerosis. There is currently no cure, and drug treatments are only effective in the earliest relapsing remitting stage of the disease.
I was diagnosed with multiple sclerosis at the age of sixteen, and have lived with the condition for seven years. It is something I have taken a long time to come to terms with, and something I hoped to understand more as I spoke with a variety of people affected by, and striving to treat, the disease.
Being diagnosed with multiple sclerosis is a roulette; a lifetime of not knowing how it can affect you, and whether you will live a healthy life or begin a rapid physical deterioration in the next few weeks and months.
Anne’s son Stephen was diagnosed with relapsing remitting MS in 1997: “It’s been a slow process, because initially he had a much milder form of the disease. He was on beta-interferon [an injectable treatment] for a number of years, but it didn’t make any difference. His MS still turned into secondary progressive.
“Sometimes it feels like I’m treating an older relative, the way the disease has affected his mental faculties. When we talk to him he gets incredibly repetitive, four or five times he will ask something trivial like where is his sister looking to live, it’s always just the same question over and over again.
Stephen is good with numbers, he used to work as an accountant and was an excellent chess player. He still plays chess with his father, though my husband has to work quite hard at letting him win periodically, he’s losing his grasp of the game.”
The one clear silver lining of living with MS today is that the potential for receiving an effective treatment will be far greater than ever before. Mike Winant, 69, recalls what it was like to be treated for MS back in 1965: “It was very hit and miss. My father took me to a place in London, that was the first place I had even heard the term ‘MS’. The doctor made this antigen, she took the germs from my body and made some stuff to inject me with, whether it had any effect or not I don’t know. In those days it was the blind leading the blind.”
Improved technology and awareness of symptoms, including opticians being trained to spot the signs of optic neuritis [inflammation of the optic nerve that can lead to vision loss], has reduced time between first symptom and diagnosis to an average of two years, as compared to seven years in the 1980s.
Yet the requirement for doctors to see two clear symptoms of MS before diagnosing the condition, regardless of MRI results, has left many sufferers waiting in a limbo before they can be treated. Bethany Dokal, 22, recounts her own experience being diagnosed with MS in 2012: “I went half-blind with optic neuritis when I was seventeen. My Dad’s a paediatrician, and knew an MS specialist who was happy to take a look at me.
“I was scared that I would permanently lose sight in the eye before I could be diagnosed. I had three MRI scans in a year, and every time they showed my condition getting worse. When I was eventually diagnosed I was happy in a strange way, because it meant I could finally start getting treated. But it was frustrating how long it took.”
Unfortunately for patients, the need for doctors to see a variety of symptoms remains a necessity, as a number of MS symptoms can also point to different illnesses. This means a premature diagnosis can lead to scenarios such as that which affected Julie Crouch, who in 2003 was misdiagnosed with MS and injected herself with immuno-suppresant Rebif three times a week for thirteen years before discovering she did not have the disease.
Diagnosis is the first step on a long road of treatment and possible relapse, and reaction to hearing this life-changing news can vary as much as the MS symptoms themselves.
Paul Friend, 46, who was diagnosed with MS in 2003 and now uses a wheelchair, said: “I had been stuck at home on sick leave watching a TV programme about a hospital in Leeds. There was a little girl on there with all the same symptoms as me, diagnosed with a brain stem tumour. I couldn’t grip onto anything, and I found myself crying, convinced I had a brain tumour.
“Two weeks later I came back, I had optic neuritis by this point as well, and I was diagnosed with MS. My first feeling was utter relief.”
While Mr Friend and Ms Dokal were thankful to be diagnosed with MS and finally receive clear answers about their condition, another common response to the news is denial.
Val Maloney, 56, was diagnosed with MS in 1999: “I never saw it coming, I knew nothing about it, and I thought to myself, I don’t want it, I’m not going to have it. After a year I had a relapse, and I had to face up to the MS.
“With my trouble walking I couldn’t avoid telling my parents any longer. My Mum was asking some simple questions. My Dad couldn’t speak, couldn’t say a word, and I just left him to soak it in.”
Beth Dokal almost lost sight in one eye before being treated and Paul Friend spent a week thinking he had a brain tumour. I found this unsurprising, as almost every person afflicted with MS told me of the worries and lack of direct communication from the NHS prior to diagnosis, as well as my own experience of spending four days in hospital before being told I may have the disease.
Lynn Hurst, manager of the Harrow MS centre, thinks these are all examples of a wider problem: “There’s a woeful, pitiful amount of information given to people at point of diagnosis. It’s getting better slowly, but neurologists are an odd breed. They’re not exactly still wearing bow ties, but in their heads they are. I’ve heard people say that their neurologist patted them on the shoulder and said ‘this is what you’ve got’. No information, no follow-up appointments.”
The issues of communication are also linked to the sparsity of specialist MS Nurses employed by the NHS, with just 230 available for the 100,000 MS sufferers in the UK.
Money and medical expertise earmarked for multiple sclerosis will be stretched ever thinner as NHS cuts to specialist services continue. Sufferers of relapsing remitting multiple sclerosis already represent a financial black hole for the NHS, with a year’s supply of disease modifying drugs costing up to £30,000 per person.
Considering these expenses, the variety of possible drawbacks affecting MS care can be weighed against the massive advantage of every relapsing remitting patient in the UK being guaranteed access to drug treatment.
Joan Bradley says: “The drug companies, the government and the charities are all part of a risk sharing scheme to ensure equity across the country in giving all patients access to these drugs. On that front we’ve been very well supported and have been given the chance to provide quality care.”
Outside of any issues with therapies and communication with the NHS is the dream of an outright cure to multiple sclerosis.
Earlier this year interest in stem cell therapy as treatment and potential cure for MS was sparked by the Panorama programme ‘Can You Stop My Multiple Sclerosis?’. The broadcast focused on MS patients receiving a trial treatment in Sheffield, in which sufferers of relapsing remitting MS had their immune system ‘knocked out’ by chemotherapy, then to be restored using a stem cell transplant.
While stem cell treatment is a hope for the future, and the patients in the documentary showed significant improvement in their condition, there are also concerns over the severity of receiving an aggressive course of chemotherapy as treatment. Val Maloney does not wish to be a “guinea pig” for stem cell, while Paul Friend is wary after considering a private scheme in 2007 that turned out to be fraudulent.
The founders of that operation, Stephen Van Rooyen and Laura Brown, remain wanted fugitives after officials in the United States found the stem cells used were solely intended for use in laboratory research on animals. These stem cell treatments had no noticeable effect on their human clients, and came with a $20,000 fee.
There is also still no definitive explanation as to what causes MS originally. Mr Friend says: “There’s no point in repairing the myelin if you’re not going to switch off the process that’s causing the damage. Otherwise you can go through all that [stem cell therapy] only for the disease to come back.”
My impressions of multiple sclerosis was that attitudes towards the disease were far different for young sufferers such as myself and Beth, who in the early stages of the disease feel removed from the considerations of being cared for by relatives or the risks of stem cell therapy.
Beth Dokal said: “You don’t really know how MS is going to manifest itself. I’m quite optimistic about my condition, maybe I’m being naive, but I feel quite healthy. I’m relapsing-remitting, I’m a woman, I’m young, in terms of the MS spectrum I have the best things going for me. I have no reason not to have faith in the research they’re doing.”
While there can still be confusion prior to diagnosis, with the massive amount of information now provided online it is possible for a newly diagnosed patient to become highly informed of MS themselves, and become aware of every possible symptom and the best ways to get treated.
However, the spectre of secondary progressive MS still hangs over those suffering from relapsing remitting, for deterioration can be rapid and irreversible once the shift takes place.
But with the available drugs and increasing understanding of the condition, there is also optimism in the MS community that there may finally be light at the end of the tunnel, and medical advancement can slow and one day even stop the onset of multiple sclerosis.
As Paul Friend said to me: “There will be a cure, too late for me. Not for you though, lucky bastard!”