Each time I called Anita in, she’d wave and smile, but it would be less than five minutes before the tears would flow. Coming up to two years after her diagnosis, I started wondering whether the combination of injections and seeing me was doing more psychological damage than the actual MS. Her scans showed no progression in that time, and she had no attacks, so she continued her fledgling medical career.
Anita got more comfortable with the diagnosis and, with good news of no new white spots on consecutive scans, optimism began to creep in. Then, however, the scans showed a few new white spots. (This can happen even when someone has had no clinical attacks or relapses and suggests that the brain is being damaged even if there are no symptoms. It is another reminder of how little we know of the workings of the brain.) At this news, Anita admitted that, though she liked me personally, she hated seeing me around the hospital, particularly if she was feeling relatively well; no one likes to see the doctor who is a reminder of an illness that will never go away, and, unlike most, she had to go to work with hers.
A few years into her illness, and decades after the first wave of effective MS treatments, a new option became available that didn’t need to be injected. Anita jumped at the chance to take a tablet instead of an injection, even if it meant doing so every day for the foreseeable future. Nothing is for ever in life, I reminded her – new, better and less intrusive therapies were being developed every couple of years.
Though easier and less upsetting for patients than injections, tablets bring their own problems. Everyone starts with the best of intentions, but research has shown that up to half of the people taking MS medications begin to miss taking them when they should and some stop altogether. Ironically, they can feel much better as a result – between the lack of side effects and the freedom from the daily reminder of MS – but stopping treatment puts them at risk of further attacks. With each attack comes the chance that someone won’t recover, leaving them for ever with a blind eye or a weak leg, for example. In spite of the risks, it’s difficult to persuade young people to think long term when they see their friends enjoying life to the full, free of the anxieties that constrain their lives. Some are frightened into a kind of apathy, and others cut loose completely with alcohol and illicit drugs, with an attitude of ‘I’m going to die young anyway, so what’s the point?’
Anita didn’t go in for that, but was certainly much better psychologically on the new tablet for MS. Happily, there was no new activity on her scans for a further two years. She brought her non-doctor boyfriend along for one consult to hear me say how well she was, and to explain to him what I had been explaining to her about MS for years. She was clearly in love with him, and he with her. I was delighted for her, but my old fears about MS and relationships gnawed away. I asked him how he felt about Anita having MS (having asked her permission to do so in advance), and whether he had any questions of his own about the condition. His response surprised me for its levity and said more about them as a couple than how the disease had affected them, which was an answer in itself.
‘We met in Coppers,’ he said, laughing, referring to the legendary Dublin night club. ‘She’s great fun, and I’m in awe of her work as a doctor. I’ve never met someone I’ve admired so much. Sure, she looks after me more than I look after her.’
Anita beamed with pride.
‘We’re going to Australia for a year,’ she said, ‘and I’ve decided not to pursue surgery – but not because of this stupid MS. I just didn’t like the long hours and the stress of it.’
When I next heard from her she was working in her new speciality. She emailed out of the blue one day to say she was doing well, and had married ‘the boy from Coppers’, as she called him. She asked what I thought about her having children.
In years gone by, when there were no treatments and no scans to monitor the condition, neurologists sometimes advised young women not to have children. Imagine what a terrible blow that was on top of a diagnosis of MS. Thankfully that has changed and, although it undoubtedly adds another layer of anxiety, most of the young women I see now have babies if they want to. Still, old stereotypes of the disease abound and are hard to shake. I recall one patient, Nicola, who was diagnosed with very mild MS in her late teens. I was thrilled when, years later, Nicola and her husband brought their baby boy to her appointment a few weeks after the delivery. She had had no problems with MS throughout her pregnancy, but was distraught because a midwife in the UK had suggested she be careful when holding her son because of, ‘You know, the MS.’ I am sure the midwife didn’t mean to be cruel but the effect of such a remark on the sleep-deprived new mother was crushing in her moment of jubilation. After all, if an experienced medic could make such a clumsy remark, what must everyone else come out with?
As a neurologist my perspective on motherhood for young women with MS is quite practical. In addition to the joy of having children, the responsibilities they bring mean that people have less time to dwell on their MS. They also start to take their medication much more fastidiously, now that they have another reason to try to stay as well as they possibly can.
When she was diagnosed, Anita’s attitude to motherhood had been ‘I’m not having children and am going to concentrate on my career for as long as I am well.’ So when I heard from her it gladdened me to learn that she had changed her mind. I said that she should not get pregnant while taking the medication but she could stop taking it while trying to conceive and throughout pregnancy. The medication is not risk-free and has the potential to damage a developing baby. Of course, there was a risk of an attack while she was off the medication, but ultimately this was a decision that only she could make. Given the excellent state of her health, I said she should go for it if she wanted to.
Within a year I got another email. Anita sent me a photograph of herself, the boy from Coppers and their two-month-old daughter on the beach in Sydney. She was keeping well, and enjoying both work and life. She talked of the future and coming home to Ireland. She even asked for a reference for a post that she planned to apply for in the coming months. Her confidence had returned. I am sure she still had dark moments, but now I could see that she could live, and live well, with this curse of a disease.
12
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LIVING WITH A LABEL
‘Neurology? Why would you bother?’ asked one of my senior colleagues, genuinely puzzled by my interest in the field, ‘You’ll be replaced by MRI scans soon enough.’ He had a point. The introduction of magnetic resonance imaging scans gave insights into the brain that were almost unthinkable up to that point. For neurologists it was as mind-blowing as kids getting a new-generation computer game. But MRI studies, while undoubtedly an outstanding diagnostic tool that have transformed the work of neurologists and many other specialists, come with their own problems.
When I started training, MRI scanning was in its infancy, so even making a diagnosis of MS relied on carefully assessing the patient’s symptoms and then a very detailed examination. Many times I saw consultants not even mention the possibility of MS to patients who had only suffered one or two intermittent attacks; in essence, the patient would go into an extended remission and we would adopt a ‘wait and see’ policy. The doctor would hope that the would-be patient didn’t experience any more symptoms, and, if they didn’t, would never hear from them again. They handled it this way mainly because there were no therapies on offer; as a result, the outcome for each patient was a question of luck rather than any medical intervention.
Nowadays someone who never had any MS symptoms might have an MRI scan – for a headache, say – and the scan picks up, incidentally, the clustered white spots that may indicate MS. This is particularly difficult for neurologists to deal with. We can’t ignore the findings, but should we treat with anti-MS drugs someone who has never had any symptoms? Usually not, is the answer at the moment – although it depends on the case, and some neurologists do treat at this stage. Practice varies internationally and patient choice is also critically
important.
We do, however, treat people who have had a single attack and whose MRI suggests that they will go on to develop MS in the future. So we now have a generation of mainly young people who have had only a single episode of neurological dysfunction and are otherwise perfectly well, but have started on a therapy because they are more likely than not going to develop MS and potential disability in the future – but not definitely.
It is emotionally fraught for the patients. How much information is too much? How much is not enough? Though a patient may go the rest of their lives symptom-free, they now have to live with the label of MS, which is a huge burden. When you try to make the discussion conversational and ask what they think themselves, not infrequently you will hear, ‘Well, you’re the doctor, you tell me.’ Fair enough, I think, but, as with many illnesses of the brain, things are rarely black and white.
Most people who come to the clinic for the first time these days will have already made the diagnosis themselves online. As a result they are not only more informed – or misinformed – than the patients of the past, but, as a result, more anxious when we meet. They’ll have come across the Lhermitte’s phenomenon, the name for the sensation I described earlier – a feeling like an electric shock that can happen when someone bends their neck and then spreads down and makes the arms and legs feel tingly. This can be an early sign of MS and they will have resigned themselves to life in a wheelchair by the time they see the GP, let alone a neurologist.
At times, patients’ online research can be extremely useful, as they have some basic knowledge about MS. But as often as not their anxiety muddies the water and I have to work out which symptoms are real and which have been picked up and assimilated – unwittingly – over the weeks or months the poor person has been waiting to be seen and trawling the internet.
Beyond the immediate reaction of stunned disbelief, even when a patient is expecting a diagnosis of MS, I can still never predict how someone will respond when they hear the words spoken out loud. Almost everyone cries. For some there may even be relief – since MS can come on insidiously, with vague symptoms of fatigue and non-specific complaints of one sort or another, when eventual investigations yield a diagnosis patients who felt they were going mad, or whose families had dismissed their worries, feel vindicated.
When it’s a young person, initially parents tend to be more upset than the patient. With couples, the partner will reach for the patient’s hand (for that is often how the person with the diagnosis is now seen, by themselves and those around them – no longer a person but a patient) and grimly seek reasons to remain upbeat. Unfortunately, the odd spouse will have over-googled and, in a well-meant bid to manage events, and oblivious to the emotional fall-out for their loved one, will start to focus on ‘solutions’. This can be unthinkingly cruel – for instance, asking how long before their wife or husband will have to use a wheelchair, or how soon should they renovate the house to make it disability-friendly.
With the discovery of therapies that significantly reduce the risk of relapses (attacks), a diagnosis of MS is often not as dreadful as it once was and we approach many cases as very manageable. We can also treat many of the symptoms such as pain, leg spasms, and problems with bladder and bowel function. We work with physiotherapists, occupational therapists and speech therapists who further help to make living with the condition more bearable. However, not everyone responds to these therapies and some people still end up disabled and dependent. Still, it is vitally important at the outset, when the inevitable question arises – ‘What next?’ – that we can offer a range of options and, above all, hope for the future.
After a diagnosis the patient’s world has been changed for ever. For a few weeks, the things that had once kept them up at night will pale into insignificance. The mortgage, work, their elderly parents; all become less pressing as they face the fact of their mortality. How will their spouse see them now? When they’re exhausted after a hard day at work, will people respond by tilting their heads in sympathy? Never again will someone shake off the numb hand they wake up with without worrying they’re having an attack that heralds the next phase of their condition.
Some people with MS report that their symptoms get worse in hot weather (a well-recognized complaint called Uhthoff’s phenomenon), whereby a patient experiences a recurrence of previous symptoms while their body temperature is elevated. I always recall a young tennis fanatic with MS who played the game to a reasonably competitive level until he started to miss the ball to his right – but only after the fourth set. He gave up his favourite game as he worried he was ‘making his MS worse’ (this was not the case), just as some patients give up family sun holidays they always enjoyed. These are small ways that living with MS can sap the joy out of life, even when the condition isn’t very far advanced; the effects can be very dispiriting – not just for patients, but for those around them too.
There is so much to ask and so much to tell in such a limited time when breaking the news of a diagnosis. We don’t know with any certainty the course that MS will take in a given individual. The majority of people who develop MS have what’s called a relapsing-remitting course: they suffer an attack, then recover, and then have another attack later. Many of these people will eventually stop recovering from attacks. Then the condition usually enters a slowly progressive phase, called secondary progressive MS, whereby the person gradually accumulates progressive disability, ending up possibly needing crutches or a wheelchair. A smaller subgroup of people get a type of MS that is, as yet, less treatable, called primary-progressive, which gets steadily worse without any remissions from the onset, and is stubbornly resistant to the therapies that can help the relapsing-remitting type.
Because doctors don’t know the exact cause of MS, patients with the disease feel even more vulnerable. Doctors cannot accurately and honestly predict what someone with the label of MS will be like in a year, or two or ten. We can, with experience, look at a person and their scans and offer various therapies that will hopefully ameliorate the disease, but we can never be sure. I have sometimes told someone they are doing well, only to hear from them weeks or months later that they have had a serious attack. And I have privately feared the worst for a young man or woman who presents with what appears to be an aggressive form of MS, only to find the treatment working wonderfully.
I see people with relatively benign disease who had a single episode in the 1970s, another in the 1980s, and who are only very intermittently affected by the condition throughout their long lives. In fact, some people who have died of something else entirely have turned out to have had MS that was found only at their post-mortem; they never even knew they had it. Yet regardless of the wide spectrum of ways the disease can affect people, most of us have a fixed picture in our minds of the wheelchair and a life of dependence that will follow a diagnosis. Only when you’ve seen thousands of people with MS can you really appreciate how varied the condition can be. There is far more to it than the label might suggest to most people.
Regardless of the many medical therapies that have been developed over the last two decades, when discussing treatment for MS it is my experience that people are most likely to ask me first about changing their diet. It is as if in some way the diagnosis is their fault, which it most certainly is not.
Many come equipped with a list of potential cures for the disease. These tend to run in trends down the years. When I was in London in the late 1990s, a woman in the UK received a lot of publicity for her MS ‘cure’, a cocktail of vitamin B12, Coca-Cola and an anti-depressant. As with all such fads, it took a long time for this ‘therapy’ to fade from the popular imagination. Another belief that took hold was that mercury caused MS, and so people began to have all of their old dental fillings removed. And on they go. A few years ago, a surgeon in Italy treated his wife who had MS by dilating the veins in her neck. The theory, in essence, was that MS may be due to congestion of the veins; by dilating them, the ‘drainage’ system of the blood from the br
ain, and thus the condition itself, would be improved. Vulnerable patients were flocking to clinics across Continental Europe to have the expensive procedure. The publicity online was intense, the clamour was growing for it to become part of routine treatment for MS, and the treatment had to be rigorously investigated by neurologists. It was never definitively proven to work, and it too appears to be fading away.
Friends and families commonly ask about complementary or alternative therapies that can help. Cannabis is the main one. In a few studies cannabis has been shown to – possibly – alleviate the spasms some people with MS and other neurological conditions can develop. We have many proven drugs for such spasms and offer these, but there is something of the conspiracy theory about the non-use of cannabis – people seem to think the government is denying their loved ones the treatment they need or that doctors don’t want to give the drug as they are in the pockets of ‘Big Pharma’. A spray form of cannabis has been made legal in Ireland, but for reasons unclear we still cannot get it for our patients. My colleagues and I have tried unsuccessfully to source some, legally of course, for patients via Northern Ireland. As for doctors having an ulterior motive in protecting drug company interests, that doesn’t hold up because the anti-spasm drugs we prescribe are mainly off patent, so there is a range of relatively cheap generic versions we can use.
Just One More Question Page 8