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.

  • Research: Finding out more

    There is a variety of sources about new research on MS. Which you use depends on your own inclinations, and indeed your own resources! The most important source of reliable and accurate scientific research on MS is that contained in the peer-reviewed scientific, and especially neurological, journals. Usually these are not obtainable directly except in specialist medical libraries, but recent key issues and findings on MS from the journals can be obtained through computer searches, often through ordinary libraries, using one of the major medical databases such as ‘Medline’. Increasingly the MS Society in Britain, and the MS Society in the United States are putting out press statements and information on major current research issues, often highlighting advances in their regular Newsletters.
    If you have access to the World Wide Web, there are now all sorts of possibilities of keeping track of new research. These include:

    • the websites of the MS Society in Britain and the United States;
    • the website of MS Trust, which is fast, efficient and up to date;
    • using one of the ‘search engines’ on the Web to trawl for updates on MS, and other sources of information;
    • joining ones of the growing number of Newsgroups in which people exchange information about new developments and other issues about MS. These latter groups are particularly important in terms of contact with other people with MS, and are often likely to be amongst the first sources of information about all kinds of developments, both scientific and non-scientific.

    Web addresses are currently changing too fast to permit any sensible listing here, but one source which is likely to be with us for sometime is the Usenet News Group at news://alt.support.mult-sclerosis. This group hosts 50–100 messages per day and includes announcements about new web pages and updates about existing pages.
    The next stage beyond these publications is to go to a good public library (a regional centre rather than a local library) and search for books on MS. Most libraries, including most local public libraries now have computer terminals for keyword and title searches. Library staff are usually keen to help with difficult searches and to help locate specific information.

  • Research: New lines of research

    Genetic research

    Chapter 1 discusses the possible causal relationship between MS, genetics and the environment. The most striking thing now is the speed at which research on possible underlying genetic factors is being undertaken. Of course, this research is part of the massive international research effort which has now ‘mapped’ human genetic makeup – in other words which has unravelled the human ‘genome’. In the course of this research more and more genetic associations with particular diseases are being uncovered. Of particular interest is the fact that genes control the human immune system, and so, if it turns out that people with MS have a clearly different genetic makeup to other people, ultimately the most effective way to manage immune system malfunctions may be to try and deal with those genetic differences. This will not be a simple process because several genes are already known to be implicated in MS, unlike some other conditions where only one gene is involved.
    Currently genetic research on MS is based on two main lines of inquiry:

    • Genes that allow the body to recognize which are its own tissues and which are those of an ‘invader’ bacteria or virus are being studied. If this recognition process goes wrong, then an
    ‘autoimmune’ attack of the body’s own tissue is likely to occur, as in MS. The genes under investigation here that perform this recognition function – ‘histocompatibility genes’ – are usually either HLA (human leukocyte antigen) genes, or MHC (major histocompatibility) genes.
    • The genetic control of ‘lymphocytes’ (T cells), which are one important class of cells responding to insults to the immune system, is the second line of study. Although there is much detailed research still to be undertaken, it appears likely that a combination of genes controlling these lymphocytes and related immune
    activity produces a susceptibility in people with MS to the disease, although other triggering factors, perhaps environmentally determined, may be necessary for the onset of the disease.

    Research on viruses and Multiple Sclerosis

    The relationship of viruses to MS has been the subject of much research over the past two decades, and causes an equal amount of controversy. Almost every year, it has been claimed that a virus specific to the cause of MS has been discovered. However, none of these claims has been sustained after further extensive investigation. The basic issue is really one of cause or ef fect. Does a virus cause Multiple Sclerosis, or does a weakened immune system have the effect of making the body more susceptible to attack by viruses? Most researchers believe the latter to be the case, but an existing faulty recognition process in the immune system may either also fail to recognize (and thus attack) an invading virus, or such a virus may, through the same process, accelerate the body’s own attack on itself. In this respect recent work on viruses is being linked to other research on malfunctioning immune systems, and genetic research is also continuing.

    Regeneration of myelin

    This research area – trying to regenerate myelin – has been significant over the past few years. The cells that produce myelin are called
    ‘oligodendrocytes’, one of a family of what are described as ‘glial cells’. If the life of oligodendrocytes could be fully understood, as well as their role in the formation and repair of myelin, then an attempt to encourage their revitalization in MS could be made. This research process has also involved investigating exactly how the nervous system responds to myelin damage and how scar tissue is formed, as well as estimating what effects regeneration of myelin might have.
    Research on myelin damage and possible regeneration is yet another story of an initially hopeful scientific development followed by major disappointment. For some time it was thought that myelin could not be regenerated at all, and then more sophisticated techniques indicated that myelin repair did occur in Multiple Sclerosis, although it was very slow and weak – and was not enough to compensate for the original damage. Now scientists are concentrating on seeing whether and how this process of repair might be made more effective. The importance of this research is the knowledge that, even if myelin has been lost (and thus messages along the nerves are malfunctioning), the underlying nervous tissue is almost certainly still intact, at least in the early stages of MS; thus, if it was reinsulated (remyelinated), it may well be able to function normally. Once demyelination has occurred for some time this may be less likely.
    Animal models have suggested that remyelination is possible in such a way as to restore some functions originally lost. Strategies have included:

    • using substances called growth factors to enhance the actions of myelin-producing cells;
    • trying to inhibit other processes that weaken the actions of those cells, or
    • in a more adventurous way, investigating the possibility of transplanting cells to produce myelin.

    There are a number of substances being tested on humans to assist remyelination, although the lessons of the disappointments of equally promising possibilities arising from animal work with EAE (see above) are important to bear in mind. It is also important to say that most of the remyelinating strategies are essentially compensatory ones, i.e. they do not address the underlying disease process that is still going on – whilst some remyelination may be assisted, other demyelination may be occurring or about to occur. In addition for those with long-standing Multiple Sclerosis, the underlying nervous tissue will probably have been damaged, as well as the myelin coating of that tissue. In such a situation, remyelination may have little or no effect on symptoms.

  • Research: Types of research

    People sometimes use the term ‘research’ in a very loose way for almost any kind of information-gathering about a topic of interest – finding out information about your Multiple Sclerosis, by reading this book for example. However,
    ‘scientific research’ involves a very particular way of acquiring information, where a specific question – called a hypothesis – is devised and tested, to find out whether, under particular conditions, that question is answered negatively or positively. To be treated as scientifically correct (valid), the same answer must be repeated under exactly the same conditions by other researchers.
    There are broadly five kinds of scientific research being undertaken in relation to MS:

    • The systematic study of the distribution and patterns of MS in different communities and countries – usually known as epidemiological research – might involve asking questions about whether Multiple Sclerosis is more common in one geographical area than another, or is decreasing or increasing in a particular population over time, and what factors might explain these differences.
    • Laboratory-based research focuses on questions related to the development of MS, for example why and how it affects specific nervous system tissue, where researchers often work at the level of individual cells; or what are the possible genetic differences between people with and without MS where blood or tissue types are examined.
    • Clinical research on patients seeks to answer questions about what is often called the ‘natural development’ of Multiple Sclerosis in individuals, through the investigation of particular symptoms and signs that develop in those individuals over time, and what consequences these have for people’s ability to function in everyday life.
    • Other research concentrates on questions about the effectiveness of potential therapies for MS, commonly undertaken through clinical trials – often after extensive safety testing in the laboratory. People with MS may be asked if they wish to participate in a clinical trial, for example to test a new drug.
    • More research is increasingly taking place in what is called applied science in relation to MS. In the absence of a cure, much of this research is investigating how, for example, physiotherapy or speech therapy can reduce the impact of symptoms, or how far psychological support or counselling can help people to manage their symptoms better.

    Each of these approaches uses scientific methods to understand Multiple Sclerosis, and assist people with the disease. However, the most common form of scientific method you are likely to come across personally is the clinical trial.

    Epidemiological research

    As we have said, epidemiological research primarily focuses on the distribution of MS in specific populations and countries. In Chapter 1 we talked about some distribution patterns that had led to important lines of inquiry about possible causes of the disease. Thus the facts that MS is found largely in temperate regions of the world and more amongst women, and that there appear to be geographical ‘hotspots’ of the disease, all seem to explain something about Multiple Sclerosis. The problem with epidemiological research is that there are many, many reasons why such patterns could occur. Most patterns are misleading in that they either disappear when subjected to detailed investigation, or are explained by another factor not related to MS. Quite a number of people with MS have found several others with the condition in their area, or have had some job or other life experience in common. It is tempting to jump immediately to the conclusion that there must be some link that has caused the MS. Usually such patterns occur just by chance – even when very odd things happen, such as two or three unrelated people with MS living in the same street. In such cases the findings of epidemiological research are primarily suggestive, and must be supported by other kinds of research.
    At present two of the most interesting, although very time-consuming, types of epidemiological research, are those trying to detect and assess all people with MS in a particular area, and those measuring the distribution in the population of certain genetic ‘markers’ linked with MS. In the former studies, findings are indicating that there are more people with MS than we had previously thought, and the latter findings are suggesting increasingly firm associations between particular genetic markers and types of Multiple Sclerosis.

    Laboratory research

    There is a very wide spectrum of research in this area; it is usually undertaken on individual cells or cellular processes, often in animals. Much of this research is linked to understanding how the body’s immune system in Multiple Sclerosis seems to attack itself. Many scientists believe that the body’s failure to distinguish between ‘foreign invaders’ in the form of bacteria, viruses and so on (which it should attack), and its own tissue (which it should not attack), is the root explanation of why MS occurs. This kind of research has identified many of the different types of cell in the immune system, how they work, and what happens when they fail or become disrupted. Studying how immune systems work both in animals and in people with MS, who also have other diseases thought to be immune related (such as rheumatoid arthritis), gives a clearer idea of what is happening in people with MS. However, such work is not always directly transferable to MS. For example, in the late 1980s, research on a disease model in animals (called EAE – experimental allergic encephalomyelitis), thought to be similar to Multiple Sclerosis in humans, revealed promising clues to therapies that might prevent EAE in animals, and thus possibly prevent MS in humans. However, it turned out that the human immune system was far more complicated than that of laboratory animals. As a parallel development a number of fierce immunosuppressant therapies were devised, in the hope that, by suppression of the activities of the immune system, then at least no further ‘autoimmune’ attacks would occur on the body’s own tissue. However, many of these therapies suppressed all immune system activity, and so led to major infections and complications, in which often the intended ‘cures’ produced worse symptoms than those of the disease they were supposed to help.
    Nevertheless, from these studies have come some interesting develop- ments – and one of these developments is work on what are called
    ‘cytokines’. These are chemical messengers associated with the regula- tion of immune system activity; understanding these cytokines has already proved rewarding. For example ‘interferons’ are one kind of cytokine and, of course, ‘beta-interferons’ have proved to give consider- able therapeutic benefit in MS. However, the position is still complicated, for some cytokines seem to make MS worse and some seem to help con- trol it; whilst beta-interferons seem to help MS, other types of interferon do not. The lesson from this particular kind of research, just as in much scientific research, is that there are many disappointments as well as new developments, and often the disappointments lead to new approaches to Multiple Sclerosis.

    Clinical research

    Clinical research directly involves studying people with Multiple Sclerosis and their symptoms on an individual basis. Although it may sound strange after many years of research on MS, what is called the ‘natural history’ of the disease is still not entirely clear, although major studies in Canada have revealed much about the long-term outcome of MS. As we discussed in Chapter 1, it is still not really possible to give anyone a clear idea of how their disease will develop over time, so much clinical research is still devoted to assessing people with MS over long periods of time – several decades – to chart as carefully as possible how their disease develops, especially in relation to early symptoms and signs. Such information is very important, in order to judge, for example, whether early inter- vention will af fect the later course of the disease. As people with the condition know, the effects of MS appear to be very fickle on a day-to-day basis, let alone a longer term one, so it is one of the most difficult research tasks to determine the specific effects of MS, as against those occurring from other, perhaps unrelated, conditions, and the effects of natural ageing processes. Other clinical research is focused on improving and developing diagnostic techniques to try and ensure that such techniques are both accurate and available as early as possible.

    Applied research

    The traditional kind of research on MS has focused on the causes and cures of the disease, and indeed this kind of research is still the most important in terms of size and funding. However, this research generally does not tackle all the everyday problems that people with MS have of living with the condition. To put it another way, whilst waiting for a cure, people with Multiple Sclerosis have had to live for years with many difficult and annoying problems, and indeed may have to wait many more years before MS and its problems are banished. Thus an area of ‘applied research’ has arisen where the focus is on researching the best ways in which people with MS can live with or manage their current and future symptoms, and their consequences. This research might include:

    • clinical trial research on drugs and other means of managing everyday symptoms;
    • the most appropriate forms of equipment that people may need, to live as comfortably as possible;
    • the most effective ways in which physiotherapy, occupational therapy and speech therapy can help people with MS;
    • the most appropriate ways in which issues of employment, housing and insurance can be dealt with;
    • the psychological and social consequences of MS, especially in relation to concerns about the quality of life, and
    • issues about counselling and support for the family consequences of the condition.

    In practice, this broad area of ‘applied research’ is one of the most significant of current research areas, and is one which – on reflection – many people with MS find extremely valuable and relevant. Although everyone wishes to find a cure for MS, a realistic view is that this will take some time, and meanwhile research on how people with MS can make the best of their everyday lives is very important.

    Clinical trials

    Much of the hugely expensive development work on new (drug) therapies is undertaken by pharmaceutical companies. The commercial return on their investment in these costs, including clinical trials, has to come from patenting and protecting the rights to the therapy involved. Potential medicines that may be freely available, or are not patentable, offer very little incentive for such companies to invest in them, unless they can in some way lay claim to a variant of the medicine concerned or a particular way of administering it. In such cases, other funding agencies, such as the Medical Research Council (MRC), step in to support formal trials on drugs or other substances that are considered promising therapies for MS.

    What is a clinical trial?
    A clinical trial is actually a formal scientific means of testing the safety or the effectiveness of a drug or other treatment, either against another drug or treatment, or against what is called a ‘placebo’, i.e. an inactive substance that cannot be distinguished from the ‘real’ or active drug by people who are taking part in a trial nor the doctors who are administering it. This way the drug can be tested for efficacy compared to the other drug or substance.
    In a clinical trial of a potential therapy for Multiple Sclerosis, usually one group of patients (the experimental group) receives the active drug or the drug being tested, and another group (the control group) receives the drug against which it is to be compared, or the placebo, the inactive substance.
    The two groups of patients should be as similar as possible at the outset of the trial, so that the drug alone will make the dif ference between the groups. Various characteristics of the two groups of people will be measured before, during and after the trial – typically these will include measures of disability, the number of MS ‘attacks’ or ‘relapses’ people have had, and other things such as blood cell counts or hormone levels. It is always hoped, of course, that the trial will show that the group who has received the active drug will do better. Thus, for the active drug to be shown to be ef fective, the trial must finally result in a statistically significant difference between the characteristics of the two groups. However, many trials are relatively inconclusive and, because MS is a complicated condition, statistically significant differences will be observed for some characteristics but not others, or indeed only for certain types of participant.

    Blinded and randomised clinical trials
    ‘Blinded’ in this sense means that you do not know which drug – active or inactive – you are taking, and thus you will not be able to exert any psychological impact on the results, or be tempted to take supplements if you know that you are in the control rather than the experimental group. People are also usually ‘randomized’, meaning that they are allocated to either the experimental or control groups randomly, i.e. they cannot choose which group they join. If people are allowed to choose which group they go into, biases may arise in the trial, as certain people, for example with milder or more serious forms of Multiple Sclerosis, may elect to join one of the groups and not the other. ‘Double-blinded’ means that the researchers also do not know which people receive which substance. The placebo and the active substance must therefore look and taste identical, so they are often provided in coded containers to each person. Only at the end of the trial is the code broken to reveal who received which compound, when the trial is ‘unblinded’. This minimizes the possibility of researchers influencing the outcome, for instance by paying more attention, or giving additional and dif ferential care, to people in the treatment group during the trial.

    The placebo effect
    The ‘placebo ef fect’, i.e. feeling better as a result of taking any
    ‘medication’ that people believe may have a beneficial effect whatever its real and unique (physiological) effects, has been shown to operate even when coloured water is drunk. Therefore there is a danger that any real effects of a drug being tested could be mixed up with this ‘placebo effect’, which is why comparing treatments in identical ways is so important. Indeed, the problem caused by the placebo ef fect is one reason why rigorous clinical trials must be performed before a new drug or other therapy can be scientifically accepted.

    Clinical trial phases
    Before a drug can be licensed for normal clinical use, there are three essential sets of information that have to be researched: its safety (a Phase 1 trial), its appropriate dose levels and the medical conditions or symptoms for which it is best suited (a Phase II trial), and its effectiveness (a Phase III trial).

    • A Phase I clinical trial is a test of safety, or toxicity, and is aimed primarily at determining whether the substance has any adverse effects on humans. Of course, before the drug is given to humans, toxicity will also have been tested in animals, cell cultures or computer simulation tests.
    • A Phase II clinical trial is usually only undertaken on a small scale and determines whether a larger scale trial is worth undertaking. Phase II trials also help to clarify which groups of people and, for example, which types of MS are most likely to benefit, and how that benefit might be measured. However, Phase II trials may not test for effectiveness, which often requires large numbers of subjects.
    • So a Phase III trial is necessary to prove the effectiveness of a drug to enable it to be licensed for clinical practice. Phase III trials are usually very large, very expensive and very lengthy, but show to a high degree of statistical certainty how effective a substance is in treating the chosen people and conditions.
    • Sometimes Phase IV trials are undertaken. These are conducted after the drug has been licensed, and thus may be described as the
    ‘post-marketing phase’ of trials. In such trials, longer term side effects may be assessed; the drug may be tested in different types of MS; or its use may be tested in other conditions – perhaps not associated with MS.

    Of course it is important to say that, even when a drug has been tested in all three Phases (I,II and III) and is licensed for clinical use, it may still not become widely available owing to its cost, practical problems in administering it, or its generally unacceptable side effects.

    Which drugs are tested in clinical trials?
    As we have implied, in order for a drug to be licensed for clinical use, it has to go through the complicated process of clinical trials, and such a process is very expensive. Increasingly, international pharmaceutical companies sponsor the majority of such trials, with additional support from national Multiple Sclerosis Societies, and government-funded Medical Research Councils. Whilst pharmaceutical companies necessarily use scientific methods to evaluate the drugs that they themselves have developed, the choices as to which are subjected to the most expensive Phase III trials, or indeed the initial choices as to which drugs are developed, must – in their terms – be subject to a commercial judgement on their part. This would involve making a judgement about the size of the market for such a drug, and its likely profitability, as well as, of course, making a judgement about its likely efficacy.
    It would be reassuring to believe that only a scientific basis was used to decide which drugs were subject to Phase III trials, but generally there are far more drugs that could be subject to such trials than the funding available, and it is clear that commercial as well as scientific factors must intrude in the selection process. Such a process, at least from a commercial point of view, is likely to relegate drugs with a potentially low profitability, or which cannot be patented. The history of therapeutic possibilities in Multiple Sclerosis is littered with the hopes of people often for non- patentable substances in relation to the disease – such as evening primrose oil, hyperbaric oxygen and, most recently, cannabis. It is very unlikely that pharmaceutical companies would be involved in testing such substances unless they can patent a variant of the substance concerned, and thus usually – as in the case of all three substances mentioned – medical charities and/or the government-funded Medical Research Councils themselves would need to fund such trials. Such funding may occur in response to the continuous and widely expressed concerns of people with MS, although decisions for this kind of funding are not normally justified on this basis.
    Finally, it is worth saying that, although some major potential therapeutic advances will remain untested because of the particular focus of the pharmaceutical companies, this is unlikely because of the significant number of checks and balances made by the Multiple Sclerosis Society and the Medical Research Council.

    Participating in a clinical trial
    First of all it is important to say that, if you participate in a clinical trial (especially a Phase III trial) for MS, it will generally not be guaranteed that you will receive the new drug – but you will indeed have a chance to take it, probably on the basis of being randomized to the ‘treatment group’. You will probably have a 50–50 chance of receiving the new drug or being randomized into the ‘control’ group, who will use either a placebo or another comparison drug.
    However, there are several reasons why it is still worth your while joining a clinical trial, even if you are not given the new drug by being randomized to a comparison group:

    • To be frank, it is likely that you will receive more careful clinical assessment and support, than you otherwise would do, if you participate in a clinical trial, whether you receive the new drug or not. This is because all those participating have to be meticulously and regularly monitored.
    • You will almost certainly gain from the placebo effect, whatever you are taking in the trial.
    • You would have the altruistic satisfaction of participating in a trial that would benefit others, even if you do not have the new drug yourself.
    • Often trial procedures allow standard tried and tested therapies to continue to be used if, for example, you have an attack or exacerbation during the trial.
    • More frequently now, trials compare one drug with another, not just with a placebo substance. In these trials you would receive an active drug, whichever group you were in. Indeed the comparison drug will already have been shown to effective in managing some aspects of MS, and often the new drug is one in which only a marginal additional assistance for MS is hoped for – but not yet known.

    Depending on the type of clinical trial concerned, people are used from many different sources, but the largest sources of all are people with MS already under the care of neurologists, or those who are attending hospital clinics. In Britain the major means of recruitment is usually directly through your neurologist. When they are notified of a particular trial, they will investigate their own lists of people with MS to see whether any are suitable for the trial. You would then be contacted and asked if you would be prepared to participate. Of course, you can make your neurologist aware of your interest in clinical trials at one of your assessment meetings or by letter. Increasingly, in the United States, trials are more widely advertised through specialist centres and publications, and people can apply directly to participate, but in Britain this more open process of recruitment is still in its infancy.

    Eligibility
    One of the things about clinical trials is that they all have what are called eligibility criteria. These are often very specific, and relate to the particular types of people and the particular types of MS that they feel would most benefit from the new drug. These criteria could mean that your type of MS is not considered to be the type that could gain most from the new drug. There is also another consideration here. In order to be able to test for the effectiveness of a drug over a reasonable period of time, people whose Multiple Sclerosis is currently changing relatively rapidly, or who are having attacks, or in whom progression is more measurable (for example in relation to changes in the ability to walk) may well be chosen, in preference to people whose MS is worse overall but is relatively stable. Thus it is often frustrating for people with long-standing MS to be excluded from some trials, on the grounds that they cannot walk, or that their MS is too advanced. However, more recently, for such people who wish to participate in clinical trials, some of the newer interferon family of drugs, and indeed others, are now being tested on people with longer term and progressive MS. Do not to get too disheartened if you are not eligible for one clinical trial, because there may be others you can join in due course.

    Payment for drugs
    You should not be asked to pay for any drugs you receive in clinical trials in which you participate. As a matter of principle, either pharmaceutical companies or other funding bodies of trials pay for these drugs. Indeed your travelling expenses will usually be reimbursed if, for example, you need to attend for assessment at a hospital more frequently for the trial than you would otherwise have done.
    There is one issue of payment, however, that sometimes arises, and that is at the conclusion of a trial, when a new drug may be found to be ef fective, and participants wish to continue taking it. Usually trial funding bodies will not pay for any continuing administration of the drug beyond the end of trial, and you would have to negotiate any such administration through your usual doctor. In many cases this may be difficult, not only because new drugs may be very expensive but also because they may not yet be licensed for clinical use outside a trial.

    Patient consent
    It is a requirement for participation in all properly conducted trials that you – as a potential participant – give your ‘informed consent’. You will have received a form and almost certainly have had a discussion with your doctor, and this form states the nature, benefits and risks of the trial, and asks you formally to give your consent to participation in the trial. You are also agreeing to follow the procedures that the trial requires. The form should be written in clear and plain English, and usually Ethics Committees, who give necessary ethical approval for such trials, try and make sure that such forms are not written in medical or legal jargon. If there is anything, anything at all, that is not clear in the document, then it is essential that you ask for clarification before agreeing to participate.

    Some recent trials on beta-interferon
    The results of some recent clinical trials have shown that the beta- interferons may slow down the course of the disease over a 3–4-year period. We must remember that the criteria for ‘relapsing-remitting MS’ in trials are drawn very tightly and many people have types of MS that were not covered by previous trial findings. New trials are underway to test whether these other people might benefit as well. However, because it is more difficult to test the effects of such drugs in people with more complicated relapsing-remitting, or progressive types of MS, the findings are taking some time, although initial results are promising. The difficulty is turning out to be not just the effectiveness of interferons in these cases but their cost effectiveness. Although it has been shown that interferons may slow down the disease in some people, the number in which this occurs is not large, and the costs of the drugs are very expensive. A number of clinicians and also, importantly, other bodies regulating the extent to which the drugs can be used on the NHS for such types of MS were reluctant to see it made available for all categories. Now there is agreement with the pharmaceutical industry to share expenses of the treatment.

    Previous trials on steroids
    One trial on steroid therapy has indicated that the steroids reduced the risk of developing clinically definite MS by half over a 2-year period. There have been serious criticisms of some aspects of the trial, and further trials are needed on this issue. However, further trials to test whether this was an abnormal result or not are very difficult to organize. It is almost impossible to identify and ensure that enough people participate in such a trial with very early, and especially the first, symptoms of Multiple Sclerosis, i.e. within a month or so of those symptoms appearing
    – and also to ensure that they have an MRI scan within this phase. Because the beta-interferons and other drugs have shown more overall promise in MS, there is now some reluctance to conduct large-scale and expensive trials on steroids.

  • Research

    Research on the causes, possible cures and ways of managing Multiple Sclerosis has increased dramatically in recent years. Much of the information that has advanced our understanding of Multiple Sclerosis  has come from what is called basic research – general knowledge of how the brain and central nervous system work and, more recently, how susceptibility to disease may be transmitted genetically. By research, we mean scientific research predominantly conducted by universities, scientific research centres and pharmaceutical (drug) companies. Results of this work are normally published in scientific journals through a process called ‘peer review’, which means that the work is always subject to critical scrutiny and assessment by other scientists. Through this means, new ideas or theories about MS can be thoroughly evaluated and tested.

  • Other women’s issues and the menopause

    Urinary symptoms

    One of the problems that women with MS face is that they might put almost any symptom they have down to the MS, and concern themselves less about other possibilities. As a general rule, it is important to have any significant symptom you have medically examined. Of particular importance to women is that any urinary symptoms are fully examined, for there is growing evidence that, although many such symptoms are neurological in origin, and are difficult to treat directly, many others are the result of urinary infections, which are, for the most part, treatable. Indeed, if left untreated, such infections can lead to other significant problems.

    Routine tests

    It is important for women with MS not to neglect other routine tests such as cervical smears and mammograms. If you are taking any immuno- suppressive drugs, such as steroids or interferon-based drugs, you should have such tests more regularly. In a suppressed immune system, it is more likely that precancerous changes will occur in the cervix, for example, and early detection is important.

    HRT and the menopause

    There doesn’t appear to be any evidence that menopausal changes make MS worse, but do discuss the possibilities of hormone replacement therapy (HRT) with your doctor.

    The most obvious benefit of HRT is in reducing the possibility of osteoporosis (thinning of the bones) in someone with MS, who may already have mobility problems, and be in danger of falling from time to time. A combination of osteoporosis and increased likelihood of falling might result in fractures that will be difficult to manage. Whether you have HRT or not, you should have a good intake of calcium, both before and after the menopause. A daily intake of at least 1000 mg is recommended before the menopause, and 1500 mg after it. Dairy products are the easiest way to increase calcium intake, although you may obtain calcium from a range of other calcium-fortified products, or calcium supplements.
    Other possible benefits of HRT may include:

    • decreased vaginal dryness;
    • reduced risk for colon cancer and Alzheimer’s disease;
    • possible reduced risk of heart disease;
    • possible benefits in certain forms of incontinence.

    Disadvantages of HRT may include the continuation of periods, although usually these are light, and there is still some uncertainty about whether HRT increases the risk of breast cancer, although recent research has suggested that a slightly elevated risk occurs only after several years of use of HRT, and that the first 4 or 5 years of use are not associated with an elevated risk. In addition you may feel that HRT is yet another drug you are taking on top of others to manage various aspects of your MS.

  • Childbirth

    Miscarriage and relapse

    Women with Multiple Sclerosis run an increased risk of a relapse after a miscarriage as well as after delivery of a baby at the expected time. Miscarriage occurs quite commonly (about a third of all pregnancies miscarry), although many of these miscarriages occur so early in pregnancy that you may not realize what has happened. There is, however, no evidence that a larger number of pregnancies – or a large number of miscarriages – result in any worse outcome as far as MS is concerned.

    Delivery problems

    Some women with MS who have muscular weakness in their legs or lower bodies, or who may have spasms, might need some assistance with childbirth – perhaps an epidural anaesthesia, for example, or the use of forceps or even a caesarean. However, there is little evidence that MS causes major additional changes in the way that babies are delivered compared to those of women without MS.
    The general experience in relation to women with MS is that their pat- tern of delivery is no different from that of other women. The overall advice for women with MS in relation to preparing for the birth is the same for all women. Prenatal classes, run by your local midwives, and often also by the National Childbirth Trust, would be useful both for you and your partner if you have one, so that you can be taken through the stages of labour and how best to manage them. It may also be worth dis- cussing techniques of pain relief with your midwife and the obstetrician.
    There is one other point that you may need to know. If you have been taking steroids over the past few months, such as Prednisone (generic name prednisolone) – and this is one of the drugs that pregnant women have taken safely – then it is possible during the delivery that you will need an extra dose of this drug. This is because during labour the adrenal gland may be ‘overloaded’, if you have taken steroid drugs over the preceding months, and an additional dose, a ‘boost’, is needed. This issue ought to be raised with your midwife, and with the obstetrician before the delivery itself, so that they are aware of the situation.

    Breastfeeding

    If you decide not to breastfeed your baby, you can start taking your drugs again shortly after the delivery of the baby. If you decide to breastfeed, then you do need to seek your doctor’s advice – for drugs may be passed to the baby in breast milk.
    Breastfeeding is generally recognized as giving the baby the best possible food in the first few months. Of course breastfeeding is only a part of an often exhausting experience that all women have in caring for a newborn baby. If you can, arrange for someone else to help you in the first few weeks after the birth, and whilst it is important – if you wish to continue breastfeeding – to undertake all the feeding yourself in the first
    2 or 3 weeks, someone else could help with the particularly exhausting night-time feeds with previously expressed breast milk, or with a relevant formula feed.
    Just to reiterate, it is important to be very careful about drugs you are taking during breastfeeding, for they may be passed to the baby through breast milk. With the newer interferon-based drugs and copolymer (Copaxone), you must seek your doctor’s advice and you may have to consider not breastfeeding your baby, if you take these drugs.

  • Pregnancy

    Do discuss both your plans and any worries that you have with doctors, and other professional staff looking after you. Pregnancy and childbirth is a time for continuing support. You can receive good advice, and possibly information about sympathetic obstetricians, from the local branch of the Multiple Sclerosis Society or other MS support groups.
    In the past there was often very clear and very negative advice given about pregnancy to someone with MS. In general now this view has changed. A useful way to proceed is to discuss with your partner and/or family and close friends, a series of ‘What if ?’ questions, considering, for example, some of the problems that might occur financially or in relation to child care. Through these means you can rehearse some of the ways of managing potential difficulties, in the hope, and in many cases the expectation, that such problems will not occur.
    Relapses tend to be lower in number during pregnancy, and overall most women find their pregnancy is relatively uneventful from an MS point of view.

    Feeling good

    Many women with MS feel really well while pregnant and would like that feeling to continue afterwards! What is almost certainly happening is that some immunosuppression is occurring naturally in your pregnancy, and lowering the levels of Multiple Sclerosis activity. So far it has not been possible to identify any of the specific hormones or proteins produced in pregnancy that produce this ef fect, although one pregnancy hormone has been identified, which suppresses an experimental form of MS in the guinea pig. So there is some basis for optimism in this line of research. However, applying animal-based research to humans has been a notoriously fickle and unpredictable process, so it would be unwise to expect immediate developments as far as people with MS are concerned. On the other hand there is an increased risk of relapse of your MS after delivery and if you should suffer a miscarriage (see below).

    Taking drugs

    As an important general rule you should not take any drug, even an over-the-counter drug, during pregnancy, or indeed when you are considering becoming pregnant, without discussing this first with your doctor. For many drugs used to treat the everyday symptoms of MS, there is substantial information available about the consequences of their use during pregnancy, and many of them are safe to use.
    Those drugs that are now being used to treat the disease itself, rather than any one specific symptom, such as the interferon-based drugs (such as Avonex, Betaferon and Rebif) and Copaxone, are powerful immuno- suppressants, and it is still not clear what effects they will have on an unborn baby. You should stop taking such drugs once you have started trying for a baby, for it will be some time before you know you are pregnant and in the meantime the fertilized egg could be developing. It is a question of balancing your own concerns about the effects of Multiple Sclerosis on you, and the health of your unborn baby. The decision may not be an easy one to make, but most mothers treat the health of their unborn baby as their main concern at this time.

  • Pregnancy, childbirth and the menopause

    Issues concerning pregnancy and childbirth often worry people with MS and their partners, as many will have recently embarked on relationships in which they will be considering the possibility of having children. Bringing up children is also another area that concerns both people with Multiple Sclerosis and those close to them. We also discuss problems older women might encounter.

  • Holidays

    If you plan your holiday carefully, you should have no major problems with travelling. Try and stick to a schedule that is not too demanding and, perhaps just as important, allow yourself time to rest at the other end. You might also consult your doctor when you are planning your journey to see if he or she has helpful advice. By and large most airlines are very good at providing extra help and assistance for people with disabilities, including those in wheelchairs, as long as they are notified well in advance of your requirements.
    There are a range of tips and advice for longer journeys and holiday travel. If you have vision problems and you are travelling by car, you could enlarge any maps or written instructions before your journey begins. You could also use a highlighter pen on the map to mark out your journey or a magnifying glass with a light on to help you see the map.
    In relation to air travel make sure that you give notice on any special requirements you have (such as meals) well in advance. Many airports have motorized ‘buggies’ to transport people with disabilities. Do take advantage of these, and of porters if you can – you do not want to be too tired out before you have even got on the plane! Ask at the check-in (but preferably before) to try and ensure that your seat allows you to get in and out, and to move as freely as you can. If you take your wheel- chair or scooter with you, do make sure that it is properly and securely labelled and, if it has to be disassembled for travel, it might be wise to take the assembly instructions with you in case someone else has to assemble it again.
    If you are travelling overseas take a copy of your passport and any other key documents with you. You might find it helpful, if you are travelling with a companion, to have a change of clothes in each other’s luggage, just in case one of the bags is lost – it has happened! Take a special pillow with you for comfort on an aircraft or elsewhere. You might also want to take a small free-standing mirror with you. If you are in a wheelchair, most mirrors are often hard to get close to. Also a soap on a rope is useful.
    Investigate whether laundry facilities are available at your place of stay – if they are, you can often take fewer clothes with you. Obviously do check in advance whether your hotel, guest house or motel has any specially prepared rooms for people with disabilities, and especially people in wheelchairs.
    There are now a strikingly wide range of support services and organizations for people with MS, almost whatever their disabilities, who wish to take holidays at home or abroad. The key, as we have noted is to plan well in advance, and undertake thorough research about where, and particularly how, you wish to go.
    Information on holidays for those with any form of disability can be obtained from a number of sources and there are a rapidly increasing number of sites on the internet giving wide-ranging information. Perhaps a feature of these and other sites is what many people might think of as increasingly adventurous holidays for people with disabilities from skiing to sailing. For sailing the Jubilee Sailing Trust has for many years been offering active sailing holidays for those with disabilities as well as able-bodied people on its two tall ships; it also has a very comprehensive list of the websites of other disability organizations.
    There are an increasing number of specialist services who can help people with disabilities including, for example, Assistance Travel and Accessible Travel. Other services are increasingly being set up to assist people, not just with MS, who may require special assistance or support in arranging their holidays.

    Taking medicines abroad

    You should check that you have an appropriate supply of any drugs you are taking whilst you are abroad, for it may not be easy to obtain additional supplies. Sometimes it can be difficult to find a doctor with the necessary expertise, and drug availability and drug licensing conditions are often different. Some drugs may not be readily available – even on prescription in some countries – and certain drugs may only be prescribable by particular kinds of doctor (hospital specialists, for example). Some medicines really need to be kept cool so you may need a
    ‘cool bag’ to ensure that they are not spoilt.
    It may help to have a letter from your doctor explaining what drugs you are on and what they are for, to avoid possible customs problems, or if you need further supplies in the country to which you are travelling. Customs may well be very interested in your supply of needles if you self- inject, so a letter could get you out of trouble! If you feel you are a bit forgetful, or even if you are not, it is a good idea to divide your supplies into two, placing them in separate bags or suitcases just in case yours gets lost or mislaid. If you wear glasses, take your optician’s prescription with you in case you lose them. For general information, the Department of Health produces a leaflet called the Traveller’s Guide to Health (see Appendix 2). It is also worth repeating that you should have adequate health insurance, and be sure to list MS among what insurance companies call ‘pre-existing medical conditions’.

    Financial help

    There are some organizations that you can apply to if you need financial help for a holiday, although it is important to say that help will be based on your circumstances. These include:

    • the Holiday Care Service
    • the MS Society, both locally and nationally (although funds are limited)
    • some local authorities, and
    • local charities.

  • Day trips out

    Managers of theatres, cinemas or concert halls have generally been slow to understand and provide for the needs of people with disabilities. However, the situation is changing rapidly and people are more aware of the importance of disabled customers; negative publicity about access and other problems has helped push this along. Whilst many venues are more prepared for people with disabilities, it is a still a good idea to contact the management before you go, to explain your situation and what you will need. Some seats, or positions for wheelchairs, may be better than others, and notifying the venue in advance should ensure that your needs are better catered for. You may also find that certain performances (for example, matin?es) are less crowded than others.
    Provision for people with disabilities at cinemas has improved enormously in the last few years. There are still some problems for disabled cinema-goers, however, owing to the number of older 1930’s cinemas which have been converted into several screens. The ‘main’ screen is often in the circle of the old cinema and accessed only by several steps. However, a good number of ground-floor screens have wheelchair spaces with flat access, or via a few steps, possibly through a side exit.
    An increasing number of cinemas are using automatic computerized booking systems via the phone, where you can pay for your ticket by credit card and simply collect it on arrival. Some have an enquiry method for disabled patrons that puts you through to the management to make necessary arrangements. The larger cinemas have facilities available such as seats that provide additional leg room. To find out about the facilities for disabled patrons, contact the cinema showing your choice of film direct and ask for details.
    As far as theatres go, many of the larger venues now have adapted toilets and facilities. In some theatres, it may be necessary for the occupant of a wheelchair to be able to transfer into an aisle seat, with the wheelchair stowed elsewhere. In other theatres, seats can be removed with advance notice to make way for a wheelchair, while in others there are specific seat-less areas where a wheelchair user will be asked to sit. If you need assistance or a specific seat as an ambulant or visually impaired disabled person, or indeed for any disability, then do ask in advance. Usually the easiest access to seats will be on the same level as any wheelchair spaces, and/or you could ask for a seat at the end of a row if this is helpful.
    For other popular venues such as museums, galleries or arts centres, if you are unsure about access and facilities, contact the place concerned and ask in advance of your visit. Both access and the presentation of exhibits have been improved to suit disabled visitors, and facilities, such as catering and the provision of toilets, have been upgraded as well. Some major museums and galleries are large, making it difficult to walk or wheel all the way round in a single visit. Like most visitors, you may prefer to look at a museum/gallery map before or when you arrive, so you can select some of the things of greatest interest and plan the easiest route round. Some places will have on-site wheelchairs to borrow, but check and book these in advance if they are going to be a necessity. Ask about any entrance charges – most are free.
    Some arts centres are housed in modern, purpose-built buildings; others are based in old buildings such as Victorian town halls and churches that have been adapted for the purpose. Accessibility varies, but efforts have been made in recent years to cater better for disabled visitors. Many arts venues have multiple functions, and may include a cinema, theatre, concert hall, and an exhibition area. If you are in London, you may find it practical as well as interesting to visit a site or complex that has a number of such accessible possibilities within easy reach of each other, such as the South Bank or the Barbican centre.
    If you are going to a theatre, cinema or other venue in London, you could contact the London arts access information service, Artsline. As well as providing a telephone information line, Artsline has available an access guide to theatres in London called Open Door and a booklet entitled Disabled Access Guide to London’s West End Theatres.
    You should also check to see whether there are any services giving similar information in your area, from DIAL. Relevant help may be available from your local authority information service. Some past or present experiences may provoke you into joining one of the many local groups campaigning for better local access to public buildings and places.
    If you like visiting stately homes and gardens, the National Trust
    Handbook gives information about the suitability of its properties for people in wheelchairs, and there is a separate guide from them for properties that are particularly suitable. All give free admission to someone escorting a person in a wheelchair, and some have motorized buggies for those with mobility problems.
    Three other books give details of wheelchair access:

    • Places that care by Michael Yarrow
    • The National Gardens Scheme handbook, and
    • Historic houses, castles and gardens

    which list over 1300 properties of all types and gives information about access. Other possible sources of information are RADAR (the Royal Association for Disability and Rehabilitation), and local disability groups, or your local MS Society may have information about access issues to places near to you.