Articles on Medical Diseases and Conditions

Category: Managing your Multiple Sclerosis

Managing Your Multiple Sclerosis is not a book about what MS is, its causes and diagnosis. It is a practical guide to its management and there is more information to be found in Multiple Sclerosis – the ‘at your fingertips’ guide, which can be found in your local bookshop, library or possibly your nearest health clinic; also the MS Society can provide you with many information sheets on this subject. This new book was written by popular demand from readers of the first book who wanted to know more about practical steps that they could take in their day-to-day living with MS.

  • Treatment rather than cure

    Repairing the damage

    One of the reasons why MS is such a difficult disease to cure is that, once the CNS has been damaged, it would involve major repair of the often severe structural damage. Any further process of damage would have to be prevented as well as the previous structural damage being repaired. However, despite these difficulties, there is considerable interest in experimental work on drugs that may be able to ‘remyelinate’ damaged nerves, and drugs that may slow down or halt the process of further damage.

    Symptom remission

    Most claims for a cure for MS have been made on the basis that the symptoms seem to have disappeared, temporarily at least, but not that the structural damage of MS has been repaired. The problem is that symptoms of MS can be dormant for many years, or dramatic remissions in symptoms have occurred, but the damage to the CNS has not necessarily been repaired. Symptoms can reappear, and there is a significant
    possibility that they will do so, but without evidence that the underlying demyelination has been repaired, the disappearance of symptoms appears to be a temporary, although happy, coincidence; it is probably due to the absorption of fluid caused by the inflammatory response to demyelination. A number of newer drugs, particularly the beta-interferons and glatiramer acetate, may have some effects on modifying the disease process.
    At present therefore, treatment mainly consists of:

    • ameliorating a symptom or its effects;
    • preventing or lessening the degree or length of time of a ‘relapse’;
    • encouraging the early arrival of a ‘remission’;
    • changing various aspects of your lifestyle that will make life with the symptoms of MS easier to manage;
    • seeking to slow down the rate of progression of the disease.

    In many cases, up until recently, the treatment of MS has been on the basis of symptoms as they occur. Now, in addition to attempts to reduce the number of relapses in MS, there are increasingly promising efforts to alter the course of MS itself. There are some drugs that offer the promise of lower rates of disease progression for some people, although for how many people and for how long is a subject of major controversy. Indeed the acronym DMT is now being used quite widely in discussions of MS, but we are still not talking about a cure, just a possibility of slower pro- gression of the MS.

  • Diagnosing MS

    The diagnosis of MS has previously been a long, slow and complicated process, since there was no definitive laboratory test for MS. The newer and sophisticated brain scanning techniques that are now used, such as magnetic resonance imaging (MRI) can locate lesions or patchy scarring (scleroses) in the nervous system, but require very careful interpretation by a skilled doctor. Although many people in the early stages of MS do not exhibit the ‘classic’ symptoms considered to be the ‘textbook’ features of the disease, MRI can be the definitive test as it shows lesions in the white matter which contains myelinated fibres. Finally, many other conditions may produce symptoms almost indistinguishable from MS symptoms. Thus the difficulty in diagnosing MS lies in establishing sufficient evidence to exclude other possibilities. There is more about diagnosing MS in Multiple Sclerosis – the ‘at your fingertips’ guide.

  • The causes of Multiple Sclerosis

    The cause or causes of Multiple Sclerosis are still unknown. Although there are significant geographical variations in the distribution of people with MS throughout the world, a great deal of research has failed to uncover any tangible evidence that there are specific avoidable risk factors associated with the onset of the disease.

    Genetic versus environmental causes

    At present, the most likely cause appears to be a combination of genetic and environmental factors. Studies of identical twins, where one or both has MS, of fer what might be called the ‘purest’ way in which to investigate this theory: it appears that genetic factors contribute between
    30 and 35% and environmental factors about 65–70% of the total contribution to the cause. These two figures suggest that further research needs to be undertaken on both issues. There does not seem to be one simple gene linked to MS, but we do know, for example, that first- degree blood relatives of someone with Multiple Sclerosis, such as children and siblings (brothers and sisters), are at slightly enhanced risk of the disease.
    Amongst many other theories about the causes of MS, there has been a particular interest in the role of ‘heavy metals’. It is certainly true that an excess of some heavy metals in the body, such as lead, mercury and cadmium, may result in serious neurological damage. Lead in particular is a potential cause of neurological damage, although, with the reduction of lead in petrol, it is gradually being reduced in our environment, but at present there is no evidence that excess lead causes MS. Excess mercury can also produce neurological damage, and there has been much discussion about the possible problems with mercury-based dental fillings. However, a large proportion of the adult population will have had at least some mercury fillings in their lifetimes, and yet only a fraction of those people have MS. Dental amalgam does contain mercury which can erode over time and be absorbed into the bloodstream, but this is a very small contribution to the amount of mercury ingested by most people
    (deep-sea fish is a much greater source). The exposure to dental amalgam is well within the safety limits currently recommended for mercury.

    Infections and other diseases

    Research has not shown Multiple Sclerosis to be caused by any particular bacterial or viral infection, but it is possible that the timing of a relapse may coincide with an infection. This could be due to a change in immune activity that allows the infection to gain hold: the bacterial infection can trigger an immune response, or both the relapse and the infection may occur in response to some unknown third factor.

    Candida
    At present there is a widespread interest, particularly amongst many involved in alternative or complementary medicine, in Candida albicans (thrush). Although candida can be associated with many symptoms, as well as having a low-level but debilitating ef fect on health, there is almost no formal evidence that it is associated with relapses of MS in itself. Candida infection may be a result rather than a cause of a weakened immune system, and it is also known to be more common as a side effect of some anti-inflammatory drugs used in Multiple Sclerosis. Of course, any infection with potentially problematic symptoms should be treated with antibiotics.

    Herpes
    Amongst viruses that have prompted scientific interest in relation to MS, the herpes virus HHV-6 is one of a number currently being researched. However, as with other viral candidates for a cause of MS, this line of enquiry is controversial and much debated.

    Lyme disease
    There is no evidence that this disease, which is spread by tics living on a range of animal species in the countryside, can cause MS, although its symptoms may mimic those of MS.

    ’Flu jabs and other injections
    Many people with MS naturally look for a preceding event, such as a ‘flu jab, to explain why their symptoms have worsened, or why they have had an ‘attack’ or ‘relapse’. Research studies have failed to demonstrate any link between injections (vaccinations or inoculations) and any subsequent worsening of the MS.

    Links between MS and other conditions including cancer
    Many people with MS can point to symptoms and illnesses that seem to have preceded its onset. There is no clear definitive link that been established between the prior effects of diseases and the onset of MS. Of course as MS progresses, it may itself give rise, in ef fect, to other conditions, through a weakened immune system or just by ageing, for example.
    There is no known link between cancer of any type and MS, but it is to be expected that some people with MS will develop cancer, but no more frequently than people who do not have MS.

    Autoimmune diseases
    There are strong similarities between some aspects of other autoimmune diseases, where the immune system is triggered into mistakenly attacking normal tissues in the body, and some aspects of MS. At present these conditions are still thought to be completely separate disease entities, although it is possible that there may be some very general biological processes underlying these conditions. These processes are the object of considerable recent research.

    Stress
    Fatigue, and possibly what we call ‘stress’, could have had some effect, not as a cause of MS, but perhaps as an exacerbating factor on some symptoms. However, although most people with MS probably feel that undue stress in their lives may bring on a relapse, scientifically this issue is still being argued over. Even so, many people have their own ideas about things that they feel are linked with their Multiple Sclerosis symptoms, and try to avoid them.

    Accidents and injuries
    Studies have compared accident and injury rates in people with MS who have had relapses and those who have not. Almost all have concluded that there is no significant dif ference in rates, or evidence to support trauma as causing or worsening MS. A more general issue is whether head injuries may have broken what is called the blood–brain barrier so that some parts of the CNS may themselves become contaminated and thus be damaged by the various blood products that are released. However, the relationship of any breach of the blood–brain barrier and the onset of MS is disputed.

    Diet
    There has also been extensive scientific research on MS and diet which may have some bearing in the medium and longer term on health in general.
    There is substantial research indicating that what are called
    ‘unsaturated fatty acids’ – essential building blocks of the brain and nervous system – may be deficient in people with Multiple Sclerosis, which is why supplements containing these fatty acids have become popular. However, there is little evidence that taking supplements with the fatty acids has any major effect on MS. More generally, there is also little evidence that any particular diet has major effects on the course of MS, although some evidence suggests that a low-saturated fat diet may be beneficial as regards relapses.
    Finally, there is little or no evidence that poor diet in itself causes MS – if this were so, the geographic and social distribution of MS would be very different.

  • Symptoms of Multiple Sclerosis

    There are many symptoms associated with MS that occur to a greater or lesser degree. Some are more debilitating than others; some cause more inconvenience. They can, for example, include problems with:

    • urinary and bowel function
    • pain and changes in sensation and dizziness
    • tiredness
    • depression and cognitive or memory impairment
    • mobility
    • speech and eating difficulties
    • problems with eyesight and hearing.

    ‘Attacks’ and ‘remissions’
    Symptoms of MS often appear quite suddenly, although they may be relatively mild early in the disease, as the protective myelin sheath of the nerve concerned is damaged so much (see earlier section) that the transmission of messages to the muscles or sensory organs is
    interrupted. Sometimes this process af fects one set of nerves, and sometimes it af fects several sets. This is often called ‘an episode’, or
    ‘attack’ or, when it recurs, an ‘exacerbation’, ‘relapse’ or ‘flare-up’ of MS.
    Symptoms may almost disappear as some repair of the myelin takes place, particularly early in the disease, and ‘inflammation’ or swelling around the damaged areas subsides over the course of a few hours or sometimes days. When such symptoms disappear or become less severe, this process is usually called ‘a remission’, but there is always likely to be some residual damage to the nerves involved. Thus the same symptom is likely to reappear again, but this may not be for days, weeks, months, and sometimes for many years. As the disease progresses, dam- age will occur at new nerve sites and, from time to time, new symptoms will appear.
    Some people have one or two attacks or relapses and then there are no further symptoms for many years. At the other extreme some people may experience almost continuous progression without any distinct remissions or attacks, but just a general decline in either sensory or muscle control, or both. In between these two extremes is the most frequent pattern of MS, consisting of shorter periods of attacks or relapses, separated by longer periods of gradual recovery, i.e. remissions.

    Progression of symptoms

    Multiple Sclerosis is known as a progressive neurological disease, even though we are still not good at predicting when, how and in what ways it will progress. Most people will experience a recurrence of the same symptoms that they had before, although the degree and the timing of that recurrence is difficult to judge precisely.
    From time to time, new symptoms will probably appear, as the course of the disease affects another nerve pathway. It is hard to say what those new symptoms will actually be in any individual. They may be linked in some way to those you have already experienced, but completely new sen- sory or motor (movement-related) symptoms may appear. It is important, however, not to be constantly preoccupied in waiting for a new symptom to appear. It may occur in weeks or months, but you may be one of the more fortunate people with MS who never has another new symptom.
    As a very rough guide, at any one time about one-third of all people with MS appear to be experiencing no serious relapses, about one-third are having a distinct relapsing-remitting course with relapses of varying severity, and about one-third are experiencing a chronically progressive course. About one-third of all people with MS have serious disabilities and require significant everyday support, and a further third require
    what might be described as significant lifestyle adjustments to manage their lives with Multiple Sclerosis.

    Symptoms that can catch you unawares

    Two particular symptoms are reported by people with MS as having quite an effect on many aspects of everyday life in unexpected ways.

    Fatigue
    Lots of people with MS complain that they sometimes feel extra- ordinarily tired. This tiredness, which is usually described as MS fatigue, can be very unpredictable and difficult to manage. You need to pace yourself carefully and be prepared to adapt your life from day to day, even hour to hour. This fatigue and ways of managing it are discussed in Chapter 7.

    Bladder problems
    Up to 80–90% of people with MS have some problems of this kind, although the nature of these problems dif fers widely. Early on in the disease there may be very few difficulties: a little more ‘urgency’ perhaps, i.e. wanting to urinate more suddenly and possibly more often, or having some problems over control, e.g. unexpectedly leaking a little. Whilst these particular problems may be considered medically to be modest or minor, for people with Multiple Sclerosis they involve quite a lot of thought and careful planning. Much later in the disease process these problems can become substantial, and require several strategies to manage them (discussed in Chapter 4).
    An important point concerning all bladder problems associated with MS is that some recent studies have found a high proportion of those with urinary problems also have bladder infections that may exacerbate those problems considerably, as well as possibly causing pain. Such infections can be cured, in most cases with appropriate antibiotic treatment. So get help from your doctor on this issue and don’t just assume that all your difficulties with your bladder are caused directly by the MS itself.

    Outlook

    Medium term
    In general the progression of MS is slowest, and the outlook (often called the prognosis), is best for people who are diagnosed under the age of 40, and who have an initial relapsing-remitting history. However, the longterm prognosis, even in these cases, is impossible to predict with any certainty. A rather more helpful – although not entirely accurate – prediction can be made after assessing your disease for 5 years or so, taking into account the number as well as the severity of relapses over this period, and comparing your symptoms now with those 5 years previously. The working basis of the ‘5-year rule’, as it is sometimes referred to, is that what has happened to you in the first 5 years will be a reasonable guide to what is going to happen in the medium term. Even this rule cannot be considered by any means infallible. It is just a guide.

    Longer term
    From recent research only about a third of people with MS appear to be seriously disabled, to the extent of requiring major assistance (such as a wheelchair) for their mobility, within 15 years following their diagnosis.
    Many people – certainly when they are first diagnosed, or indeed when they suspect they have Multiple Sclerosis – consider being in a wheelchair as the thing they most fear about the disease, and what they most wish to avoid (see the section on Chairs and wheelchairs in Chapter 8). This could be, in part, because of the premium our society places on being independent and mobile, and the ways in which people in wheelchairs have been treated in the past. Moreover, it is always difficult to picture yourself in the future, in a situation when you have less of something than you have now, but this will happen to all of us at some point, whether we have MS or not. The experience of life is that almost all of us adapt to such situations pretty well when they occur, even though in prospect they may be rather daunting. In any case, as far as both coping with mobility and the public perception of people in wheelchairs go, there is a positive change taking place.

    Management of symptoms

    Symptom management in MS is often a complicated process. The symptoms may occasionally be wide ranging and so variable that a variety of strategies are often required:

    • lifestyle changes
    • drug therapies
    • psychological or counselling support
    • physiotherapy, speech and occupational therapies
    • use of equipment
    • home modifications
    • and, in some cases, surgery.

    Many symptoms or disabilities involve using more than one of these strategies, depending on their seriousness. The most important approach for all those involved in managing your symptoms is to find an appropriate balance between all the strategies, especially when several symptoms occur at the same time. There is much more about managing the symptoms and lifestyle changes in the rest of this book.

  • Types of Multiple Sclerosis

    There are almost as many different forms of Multiple Sclerosis as there are people with the disease. Each person with MS has a slightly different clinical (and symptom) profile; the precise course that any one person’s Multiple Sclerosis will take is not as predictable with the kind of detail that many people with the condition – as well as their doctors – may wish for. In this context, scientists and doctors are always trying to refine their classification of types of MS, as they get to know more and more about the condition and its symptoms. You may therefore come across several slightly different ways of describing types of MS.
    There are several main types usually described:

    • Relapsing-remitting Multiple Sclerosis. Many cases initially take the form of what is generally described as relapsing-remitting MS. especially in younger people. Symptoms worsen during an ‘attack’ or ‘relapse’ or ‘flare-up’, may be at their worst for several days or a little longer, and then gradually improve in the following weeks.
    • Chronic progressive (or primary progressive) MS. This describes another pattern where symptoms gradually worsen after the first ‘episode’ or ‘attack’, with a continuing increase in disability; often this will involve deterioration in bodily movement (described as motor symptoms) of one kind or another, or sensory performance (especially eyesight).
    • Benign Multiple Sclerosis. This is a term sometimes used to describe a course of MS in which symptoms are relatively minor, or progression is so slow that it is almost clinically imperceptible, or there are very few attacks or relapses over long periods of time – usually 15 years following diagnosis. There is growing evidence that the course of MS is likely to be initially more benign, almost irrespective of initial symptoms, for those people with fewer lesions (plaques) detectable in the CNS with a scan, compared to those who have a larger number. Unfortunately, the evidence from long-term research is that most benign ‘cases’ of MS do eventually result in significant symptoms and disability, even though this may not occur for 20 or 30 years after diagnosis.
    • Secondary progressive Multiple Sclerosis. MS can also change its form so that, for example, relapsing-remitting MS may change into what is called secondary progressive MS – when a relatively steady decline begins to occur and remissions grow less frequent.

    Finally, in case you hear this point from other sources (but don’t worry about it unduly), there is what some think to be a very, very rare variant of MS (others think it might be a separate disease), that can lead to death in a few months. This is sometimes, although completely misleadingly, described as malignant Multiple Sclerosis. There are also other rare types (for example, opticospinal MS).

  • What is Multiple Sclerosis(MS)?

    Damage to your nerves

    Multiple Sclerosis is a disease of the central nervous system (CNS); it damages the protective coating around the nerve fibres (Figure 1.1) which transmit messages to all parts of your body, especially those controlling muscular and sensory activity. It is thought to be an ‘autoimmune disease’: this is where your body’s own immune system appears to attack itself. As the damage to the protective coating around the nerve fibres – called
    ‘myelin’ – increases, it leads to a process known as ‘demyelination’ (Figure 1.2), where the coating is gradually destroyed. These nerves then become less and less efficient at transmitting messages. The messages, as it were, ‘leak’ from the nerve fibres where demyelination has occurred, rather like the loss of an electric current through a cable that is not insulated. As the messages ‘leak’, they become weaker and more erratic, thus leading to greater and greater difficulty in controlling muscles or certain sensory activities in various parts of your body.

    Healthy nerves

    Damages nerves

    Problems of repair

    Which nerve fibres are demyelinated, in which order, and at what rate, varies very widely between individuals, so the corresponding loss of muscular and sensory control also varies widely. Moreover, even when damage does occur to the myelin, it is sometimes gradually repaired (i.e. some remyelination occurs) through internal body repair mechanisms; also, what might be described as ‘inflammation’ at the site of the damage often becomes less over time. However, in Multiple Sclerosis the rate of repair is slower than the rate at which the myelin is damaged; so the damage tends to accumulate more and more throughout the CNS. This damage results in plaques or lesions, which take the form of patchy scarring (areas of multiple ‘sclerosis’) where the demyelination has occurred. Thus the name ‘multiple sclerosis’ has evolved.