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  • Some types of CAM therapy

    There are many, many types of CAM therapy that may be used by people with MS, most of which we cannot consider in detail here. Furthermore the popularity of such therapies in MS can change very rapidly, with new therapies or new variations of previously available therapies regularly appearing, and the use of others decreasing rapidly after only a brief high profile existence. Thus in this section we consider some of the key CAM therapies that appear to have gained longer term use, or appear to be on the verge of doing so.

    Cannabis

    There has been a great deal of discussion about the use of cannabis recently in relation to the symptoms of MS. Based originally on individual reports by people with MS that at least two of the more problematic symptoms of MS, tremor and spasticity, seemed to respond well to cannabis, there has been an increasing interest in its use by people with MS. However, at present, cannabis is illegal in Britain – some people with MS have already been prosecuted for possessing, growing or supplying it – and it cannot be prescribed for MS.
    Nonetheless the pressure from people with MS to research the effects of cannabis more formally has resulted in the setting up of major clinical trials, the most significant of which are funded by the Medical Research Council, although some are being undertaken by pharmaceutical companies. These trials are not using cannabis in its original form, but are using what are called cannabinoids (one or more of the very many active substances in cannabis). Thus if the trials are a success, it will not mean that cannabis itself will be made available to people with MS, but almost certainly will lead to the use of manufactured drugs that have some cannabinoids as constituents. The results of some of the key trials are now beginning to appear indicating that a statistically significant beneficial effect on such Multiple Sclerosis symptoms as spasticity (and particularly pain associated with such spasticity). In due course one or more products based on such cannabinoids will become available. However, it is important to note that becoming ‘available’ will almost certainly mean only by prescription from a medical practitioner who is willing to offer such drugs. Furthermore, even then such drugs may not become available through the NHS for some time, and may only be available initially through private payment.
    Currently, there is evidence that an increasing number of people with MS are using cannabis on an occasional or sometimes regular basis; it has become a very difficult issue because, although they do feel that they gain from taking it, they are having to balance what they feel is a significant reduction in their symptoms against committing an illegal act. Using the drug in any form is illegal, including ‘inactivated’ tinctures with limited narcotic effects. Growing, buying, selling and using cannabis carry penalties including heavy fines and jail sentences, even when there may be a medical justification for its use. There is a group campaigning for a change in the law (the Alliance for Cannabis Therapeutics) to allow the use of cannabis for medically designated purposes, and if you feel strongly about the issue you may wish to join this group (see Appendix 1).

    Hyperbaric oxygen

    Hyperbaric oxygen therapy (HBO) consists of breathing oxygen under high pressure, usually by sitting or lying in a large pressurized chamber, and this proved to be one of the more popular complementary therapies for MS in the 1980s and early 1990s. The former national charity Action for Research in Multiple Sclerosis was instrumental in supporting the installation and running of pressurized chambers in many local therapy centres. A substantial number of these chambers are still in operation in therapy centres now run by Regional Federations of MS Therapy Centres.
    The original theory behind the therapy was that MS might be a vascular (blood system-related) condition in which tiny blood vessels in key parts of the nervous system become blocked by fatty globules circulating in the blood, thus leading to nervous system damage. It was thought that hyperbaric chambers (used to assist the management of nitrogen ‘bubbles’ in the blood of divers suffering from the ‘bends’), might be a way of eliminating these circulating fatty globules, and perhaps – through the use of additional oxygen under pressure – might even repair existing damage. Many people claimed success in managing symptoms, and even slowing down or stopping the course of their MS. However, clinical trials of HBO produced a much less promising outcome. HBO did seem to have an effect for some people in lessening urinary symptoms (such as incontinence) and in reducing fatigue, but had no significant effect on any other symptoms, or on the course of the disease. Many people who say that they feel better as a result of HBO still use the therapy, although most doctors are very sceptical that it has any real effect on Multiple Sclerosis.
    Whether you choose to have HBO is, of course, up to you. The main issue from a personal point of view is setting the benefits that you feel you may be obtaining against the practical issues of attending a centre on a regular, often initially daily, basis, and being in a chamber for an hour or more while it is pressurized, reaches its appropriate ‘diving depth’ and then depressurized. Costs for HBO in the therapy centres are often subsidised, but can still be relatively expensive over the initial phase of the therapy.

    Herbal products

    Although we often think of herbal medicines as being ‘alternative’, in fact a high proportion of both over-the-counter and prescribed drugs have a plant origin. However, in recent years, herbal medicine, often considered as a natural non-manufactured therapy, has become very popular. Practitioners operate under a range of different approaches. Although herbal remedies sound very benign and safe, they can be very powerful and can have side effects. Make sure that any practitioner is very well trained in the properties, toxic as well as beneficial, of the herbs that are used, and also has a good knowledge of MS. Herbal medicine and its practitioners are amongst the newest professionalized groups engaging in complementary medicine, even though herbalism has a very ancient history. Many herbal products available in chemists and health food shops, are capitalizing on the popularity of herbal approaches to health.
    A detailed overview of the possible effects of the many hundreds of individual herbal products on MS is beyond the scope of this book, and indeed good herbal practitioners would argue that a careful process of individual diagnosis and therapeutic recommendation is needed for someone with Multiple Sclerosis. However, there are some general guidelines that it is helpful to bear in mind:

    • It is wise to think of herbs in the same way that you think of drugs
    (indeed many herbs are drugs).
    • Many herbs contain compounds that have not yet been fully identified, and some of these may be toxic.
    • Good preparation of herbal medicines is critical to ensure both their safety and their efficacy.
    • Be very careful when using herbal medicines if you have several medical problems, or are pregnant or breastfeeding.

    Some herbal medicines interact with proprietary drugs often used to treat MS or its symptoms, so it is particularly important that you talk to your doctor first if you are taking such drugs.
    As with other complementary therapies, certain herbal remedies may be of value in relation to general health, and certain symptoms of MS might indeed be helped, but there is no evidence that herbal medicine can alter the course of MS. As a final warning, it is worth noting that some Chinese herbal remedies may contain animal products, of which some may be from banned sources, or not included on the label. For a more detailed review of particular herbal products in relation to MS, see the relevant section in the book by Bowling (see Appendix 2).

    Homeopathy

    Homeopathy is a system of therapy in which minute doses of a substance are taken on the basis that these will cure or control symptoms that would be produced by the very same substance in much larger doses. This is often described as an approach where ‘like cures like’, which some people argue is similar to that of vaccination, where a very, very small dose of a disease may protect against subsequent infection – although in the case of homeopathy, the small dose is to remedy what is seen as a current ‘disease’. It is argued that, paradoxically in relation to conventional science, the smaller the dose the more powerful the effect. Many scientists argue that the doses are so small that they cannot be detected using laboratory instruments and are thus sceptical about the efficacy of homeopathy, but homeopaths believe that their system of therapy is both effective and safe.
    Homeopaths normally focus on the person as much as the disease, and thus any specific symptoms of MS are only one aspect of the person’s life and experiences, used to determine a relevant therapy. As the homeopathy is undertaken on such a person-centred basis, it has proved difficult to undertake clinical trials to prove to the scientific community that it is an effective help for people with Multiple Sclerosis. Increasingly more sophisticated trials are being developed, and some have shown that homeopathic preparations do have a statistically significant effect on
    certain symptoms, although not yet in relation to MS. Nevertheless, there are people who claim that homeopathic treatment has substantially helped their symptoms. As might be anticipated from homeopathic theories, if a remedy is given that appears to be relevant to the symptom, an initial ‘aggravation’ of the symptom may occur – in short it can get worse – before any improvement is noticed.

    Acupuncture/acupressure

    Some people with MS have reported some benefits from either acupuncture or acupressure. Acupuncture, in its traditional form, is based on the idea that energy (chi or qi) flows round the body through channels (called ‘meridians’), which become blocked at times of illness and stress. Acupuncturists use the insertion of very fine needles at key points on these meridians unblocking energy flows to help restore health. Acupressure (often known as shiatzu) works on a similar principle, but uses pressure from fingers or thumbs at these energy points.
    As with some of the other complementary therapies, it is difficult to undertake a scientific trial of the value of acupuncture or acupressure, although some very specific testing has been undertaken on pain and nausea relief using particular acupuncture points. The results suggest that, in certain circumstances, acupuncture does appear to relieve pain and nausea; however, it would be wise to seek a diagnosis of why you have pain or nausea from your GP or neurologist, before undertaking such a treatment for pain, in case there are other causes that need to be treated, or indeed other ways of relieving the pain that may be more effective.
    There have been some, albeit small, and uncontrolled studies of acupuncture on people with Multiple Sclerosis. Reports from these studies indicated a range of mild benefits in relation to several symptoms, which suggests that larger and better conducted studies should be undertaken. Acupuncture may have some effects on the immune system, although this has not yet been fully explored. However, it should be noted that, although acupuncture is generally extremely well tolerated, there are occasional reports of pain and soreness at the needle site, as well as stiffness and muscle spasms. This may be due both to skin sensitivity, and a tendency to muscle spasms in MS.

    Yoga

    Yoga is widely used by many people with MS, and there are now both specialist centres and teachers for them. From a practical point of view, in many respects yoga can be seen as providing a form of exercise known to be helpful in keeping your muscles working, as well as providing a form of calming of the mind, helpful in countering depression, stress and fatigue. Yoga is also a form of meditation that requires dedication and time. For those people who can commit to it, it may help not only with individual problems (such as work-related stress), but also everyday living. For some people it can lead to a more rewarding lifestyle. In some circumstances yoga may prove an effective technique for the management of individual symptoms (such as stress or pain), but you will benefit largely from your own efforts.
    One advantage of yoga for people with MS is that, in addition to its emphasis on slow movement, and peace and calm, once you have received some training, you can undertake the exercises at home, without any additional equipment or expense. Its emphasis on deep and controlled breathing can also be helpful, particularly if your posture is not what it should be, or if you are sitting for long periods. The main concern with yoga and MS is that you should work well within your limitations in a relaxed way, and be careful not to push yourself too far, or raise your body temperature, as this may increase fatigue. If you are undergoing, or have been undergoing physiotherapy, it may be an idea to consult your physiotherapist before starting yoga.
    You can obtain more information about yoga from the Yoga for Health Foundation, which runs special classes for people with MS and other conditions, or from the Yoga Therapy Centre at the Royal London Homeopathic Trust.

    Massage

    There are many forms of massage. Some of them are very vigorous and seek to realign any muscles of the body that the therapists believe are out of line. Such forms of massage should be avoided by people with MS, for many of the problems faced by people with the disease, such as spasticity, are a result of neurological damage, and cannot just be ‘reworked’ by a very vigorous massage. The more relaxing and gentle forms of massage, on the other hand, are potentially of considerable value, not only in relaxing muscles and reducing spasticity, but also in promoting a general sense of wellbeing. It is very important that you check what form of massage the therapist is offering, and ensure that the therapist has been well trained and, above all, knows about MS.

    Aromatherapy
    Aromatherapy is usually a massage with essential oils; sometimes oils are heated and released into the atmosphere around you. Although, in other forms of massage, an oil is often used as a lubricant during the massage, in aromatherapy specific oils are used for massage or heating and release, following an aromatherapy diagnosis of your state of mind and body. The oils are very concentrated, and should always be used in a carrier oil (such as sweet almond oil) during massage. They must not be taken by mouth. Some of the oils should not be used if you are pregnant, or have certain other conditions, such as epilepsy, and it is crucial that you let your aromatherapist know about these. Although some of the more exotic and far-reaching claims for aromatherapy have never been tested, some people with MS have found it very relaxing and stress-reducing.

    Reflexology
    Reflexology is a therapy based on the idea that energy and other flows in the body are linked to, indeed terminate, at key points in the feet, providing a ‘map’ of key organs and systems in the body. It is believed that problems in all areas of the body can thus be identified and indeed treated through manipulation of the feet.
    Some people with MS have indicated that they have found this therapy helpful and relaxing, although there is no formal evidence that it affects the course of MS, or even major symptoms of the disease. However, as a relaxing therapy, it may benefit some people with the condition.

    Chiropractic
    Chiropractic is a long-standing approach to health based on a particular view of the ways in which the human body works and may be managed. Practitioners manipulate the bones, muscles and tissues, especially around the spine, to enhance health. In chiropractic, the focus is mainly the nervous system, and enhancing the blood supply around key tissues. Practitioners can use a variety of techniques, which vary in strength.
    Chiropractic is founded on the belief that a wide range of bodily pain and disease processes originate in abnormal nerve function. A course of treatment is usually composed of short sessions spaced out over several months. Treatment consists of manipulation of the spinal column and individual vertebrae. Chiropractic recommends itself particularly for back pain and persistent headaches. In very rare instances, manipulation of the spinal column can cause lasting damage, so always ensure that you consult a qualified chiropractor and that you discuss your MS fully before any treatment begins. It is increasingly likely that your own doctor will know more about chiropractic and can discuss any possible benefits or disadvantages with you.

    Osteopathy
    Osteopathy is a relatively well-regulated and trained profession compared to other complementary therapies, and a practitioner must be registered with the General Council and Register of Osteopaths (see Appendix 1). Osteopathy, like chiropractic, is a long-standing approach to health in which practitioners manipulate the bones, joints, muscles and tissues, especially around the spine, to enhance health. In fact osteopathy regards the entire musculoskeletal system as the critical basis of good, and ill, health. Treatment may involve established medical diagnostic procedures (including X-rays and standard biochemical tests) in addition to manipulation of joints, rhythmic exercise and stretching. Osteopathy can improve mobility in some affected joints. Cranial osteopathy involves gentle manipulation of the bones of the head and spine.
    The main concern, as with the other complementary therapies, is the extent to which the use of osteopathy could significantly affect the course of symptoms of MS. Whilst a sense of wellbeing may well result from its use, there is no evidence that it has any effect on the course of MS itself.

    As a concluding point, it is important that you take note of what your physiotherapist says about osteopathic or chiropractic treatment, particularly if he or she has wide experience of people with MS, has been treating you for some time, and knows your own situation well. In addition, if you feel that your physiotherapy is helping you manage your MS, then there is every reason to stick with it – particularly as you will almost certainly have to pay additional money for osteopathic or chiropractic diagnosis and treatment. However, some people with MS have found such massage to be of value, but it is not possible to know whether you will be one of these people.

    Meditation and relaxation techniques

    ‘Mind and body’ alternative therapies have become increasingly popular in relation to MS in recent years. The rationale of such therapies is that, if a state of mental relaxation can be achieved, anxiety is decreased, and beneficial physical effects will occur – such as muscle relaxation and reduced blood pressure. There are many different techniques for achieving such mental relaxation. Indeed there are many different meditation techniques some of which are relatively simple to undertake; others require much more training and support.

    As far as MS is concerned, particularly in improving muscle relaxation, meditation and relaxation techniques may help reduce the incidence of muscle spasms and spasticity. At a more general level there is an increasing but under-researched possibility that relaxation techniques may improve the operation of the immune system. In general the possible benefits can be set positively against what, is for the most part, a very low-cost alternative therapy.

  • Costs involved

    Many complementary therapies (acupuncture and osteopathy to name only two) are increasingly recognized as having significant benefits and can, in certain circumstances and limited geographic areas, be made available through the NHS. Many GPs are now more willing to accept and recommend alternatives. However, at present in many cases you will have to pay for your own treatment. The appropriate registration bodies can provide details of registered practitioners in your local area and provide guidance on how much you might expect to pay. You may find
    the addresses of these registration bodies through the British Complementary Medicine Association or the Institute of Complementary Medicine.

  • Finding a practitioner

    Finding a competent practitioner for a complementary therapy is not always easy. There is little statutory regulation for qualifications or practice for most of the therapies and therapists. However, the best ways of finding a practitioner are through:

    • an MS resource or therapy centre, where often other people with MS and staff in the centre will have experience of particular therapists;
    • a recommendation or referral from a neurologist, GP or other healthcare professional;
    • registers set up by the professional bodies of whichever therapy you are interested in;
    • referral for homeopathy to one of the NHS hospitals providing this service;
    • contacting the British Complementary Medicine Association, or the Institute of Complementary Medicine (see Appendix 1).

    Ask whether practitioners are trained and licensed; whether they are insured for malpractice, negligence or accident; and how complaints are handled. One of the key things is to try and ensure that whichever therapist you go to has a good understanding of MS. Both of you should be able to evaluate its benefits.

  • Safety of complementary therapies

    Few complementary therapies have been fully scientifically evaluated, especially in relation to MS. Almost any therapy, scientifically evaluated or not, that has the power to produce very good and positive results, has the potential to do harm. Although complementary therapies are considered as ‘natural’ and, almost by association, to be intrinsically safe, this is not always the case. For example, some herbal medicines have to be very carefully targeted to symptoms and very sensitively administered, otherwise they may be harmful. So it is important both to ask about side effects, i.e. those other than the wanted effects, of
    complementary therapies, and to be alert in case they occur. Note that practitioners may expect initial ‘reactions’ or ‘aggravations’ or symptoms as part of the effective working of the therapy. A competent therapist should both warn you about these and what to do, if and when they occur.

  • Assessing the value of complementary therapies

    There is still a great deal of scepticism amongst many doctors and health professionals about CAM in relation to MS. This is because many CAM therapies have not been fully evaluated using controlled clinical trials – the main way through which conventional medicine is assessed (see Chapter 18). In this situation positive information about CAM is often
    from CAM practitioners themselves who have a vested interest in their success. Thus people with MS may feel they are caught in the middle, with outright medical scepticism on the one hand, and very partial and enthusiastic support from CAM practitioners on the other hand. Another issue is that many doctors, compared with people with Multiple Sclerosis, may have very different views and interpretations about the value of CAM therapies in a situation where there is no cure for MS. The way forward, pending more formal assessments of CAM therapies, is to provide as accurate and unbiased information as possible for those who are considering their use.
    There are certain key questions that you should ask yourself in relation to any CAM therapy, particularly a new one about which substantial claims are being made:

    • What detailed evidence is there that the CAM therapy might help my MS?
    • Who has endorsed the therapy? Have leading MS Research Centres or the MS Society supported the use of the therapy?
    • What are the possible side effects?
    • How expensive is it in relation to the assumed benefits?
    • How easy is it to access and undergo?
    • Are its practitioners well trained, professionally recognized and insured?
    • Would it involve you giving up, or not taking, professional medical advice or treatments?

    One of the difficulties for people with MS in relation to many CAM therapies is that, for the most part, they are focused on treating ‘the whole person’ and on general health, rather than specifically focused on the MS. Thus there is little precise information about any effects on the MS itself. However, as a broad principle, even if the course of your MS is not changed but your general health is improved, this can be helpful in managing your life with MS.
    Of course there are many stories about individual cases where a CAM therapy is argued to have dramatically changed the course of Multiple Sclerosis. Although such stories are very attractive and enticing to people with a condition such as MS, you would be right to be sceptical yourself about whether the CAM therapy itself had caused this change, and even more so about the general effects of such a therapy on all people with MS. You should be very wary about claims of ‘miraculous’ or ‘amazing’ results from a CAM therapy. If the claims sound too good to be true, they are just that. Also be concerned about the main evidence for a CAM being given in the form of individual testimonials, rather than through more
    systematic research. MS is notoriously unpredictable and thus it requires a very careful and controlled study to eliminate any other reasons for a change in the MS.
    As a broad guide, the issue for people with MS considering using a CAM therapy is balancing what you consider to be the personal benefits against any side effects and the costs incurred. Realistically it is unlikely that a cure will be found for MS from amongst CAM therapies. However, by feeling better through using them, you may consider that your symptoms have been eased and you feel a lot better about day-to-day living – not least because, unlike many professional staff in the hard- pressed NHS, many complementary therapists have the time to discuss your concerns at length.
    A book called Therapeutic Claims in Multiple Sclerosis (see Appendix 2) evaluates many therapies proposed for MS. It covers over a hundred different therapies. It has to be said that the evaluation is from a very robust scientific point of view, the evaluations are decisive and usually dismissive on the grounds of lack of scientific evidence for effectiveness. Nevertheless, descriptions of the main aspects of the therapy are helpfully given. A book more sympathetic to the possibilities of CAM therapies in MS, but which is still based on rigorous evaluations, has been written by A. C. Bowling (Alternative Medicine and Multiple Sclerosis), and there is an associated website that may be helpful to people with MS.
    For another sympathetic view of the possible benefits of complementary medicine, you might try the Institute of Complementary Medicine (see Appendix 1), which adopts a very rigorous approach to the evaluation of such therapies, or the individual professional associations of the therapy concerned. This would also enable you to check the qualifications, experience and regulation of their members.

  • Complementary therapies and Multiple Sclerosis

    When there is no current scientifically accepted cure for a disease, people understandably want to try other means of management. Many people over the last 30 or 40 years have claimed that they have the answer to MS, but the difficult problem for all such potential therapies is to find out whether there really is a connection between the treatment and a remission.
    A distinguishing characteristic of complementary therapies is their focus on the ‘whole person’, using the body’s own healing powers. Many of these therapies are only now being scientifically studied. Some complementary therapies fall outside what is considered conventional scientific medicine, but may be used alongside it, such as acupuncture. Other therapies are generally considered much more unorthodox by the medical profession (described as ‘alternative’), e.g. naturopathy, herbalism or crystal healing. However, complementary and alternative treatments are often considered as a group under the heading of CAM (complementary and alternative medicines).
    Research suggests that up to 60% of people with Multiple Sclerosis are using some form of CAM – people with MS visit CAM practitioners nearly 50% more often than others without MS. Whilst some people use CAM alone, by far the majority use both CAM and conventional medicine together.

  • Other support

    Many people with MS will need professional support services and assistance at some time, to manage the changes in their lifestyles, and to monitor effects of any new drugs. Depending on the precise nature of your MS and its effects, such services may include nursing, physiotherapy, occupational therapy, speech therapy, psychological assessment and support, counselling and advice on housing, employment, financial and other similar issues (see later chapters). Such professional support services for all the many consequences of MS have not previously been adequate, in fact often woefully inadequate and ill coordinated. Despite serious financial constraints, there are now many attempts underway locally to provide better coordinated services and support.

    Rehabilitation

    ‘Rehabilitation’ is perhaps the new watchword of longer term care in MS. Broadly it means professional care targeted to achieve your maximum potential. Regional Rehabilitation Units have been created in recent years for the support of people with many conditions, but there are also an increasing number of more specialist MS rehabilitation units or programmes. At present there are only a limited number of places available on these rehabilitation programmes, and there is a selection process involved, usually on the basis of who might be expected medically to get the most benefit.
    During inpatient rehabilitation you would normally be in a hospital or rehabilitation centre as a patient for some weeks, depending on the programme, your MS and how you progress. In this time you might be offered:

    • regular assessment and monitoring of your condition
    • carefully targeted drug therapies as appropriate
    • intensive physiotherapy and occupational therapy
    • nursing care
    • possibly speech therapy, and
    • psychological and counselling support.

    Within a structured programme the aim will be to tailor aspects of this programme to your individual situation and needs. Following the time spent as a patient, you would probably have periodic further assessments to determine how you are progressing. Increasingly MS clinics are being opened in major centres providing support for more people with MS than is available on a lengthy inpatient basis. The aim is to undertake systematic rehabilitation here on an outpatient basis. There is a concern that outpatient care may not be sufficiently intensive to produce major change in functioning.

    How useful is rehabilitation?

    There is increasing evidence that rehabilitation programmes provide some benefits for people with MS. Studies of rehabilitation programmes are very difficult to undertake in MS for various reasons:

    • People have very different types of MS, and it is still unclear as to who would most benefit from the programmes.
    • There is no completely standardized programme of rehabilitation.

    Studies that have been undertaken so far appear to suggest that a range of benefits arise for many people in the short to medium term but,
    after 1 year or more from the end of an inpatient programme, there is decreasing difference between those who have been through the programme and those who have not. Almost as soon as people with MS are discharged from rehabilitation programmes, they begin gradually to lose the gains that they had from the programme. This is not really surprising because, back home, they do not for the most part have the intensive care available in the programme, and all sorts of other issues intervene to complicate people’s lives. This is why there is an increasing emphasis on outpatient care through MS clinics and MS ‘drop-in’ centres to provide ways of continuing to offer ongoing treatment.
    Further studies in this area are being undertaken to see whether there are particular symptoms or abilities that benefit over the longer term more than others from rehabilitation programmes, and which people with MS might benefit most from them.

    Going into hospital

    Given the range and increasing complexity of tests and treatments, a stay in hospital – even as a day patient –is not uncommon and, if such a stay can be organized over a period of 2 or 3 days, it may be easier for both your neurologist and you to have these undertaken in hospital rather than on an outpatient basis, although outpatient visits will subsequently be necessary. Some treatments are given in hospital. However, neurologists do not agree on how long that hospital stay should be; some feel that the drugs can be administered with very short stays (a matter of hours), while others feel that a day or two to a week, depending on the therapy, may be necessary. Some people with MS may need to go to hospital for investigation of particular symptoms (e.g. urinary problems).
    In general, there is very substantial financial pressure, among other issues, to reduce both the number and length of stays in hospital. So, where possible, your hospital stays will be shorter except when you go in for inpatient rehabilitation (see above) and more and more people are given self-injection teaching where necessary.

  • Visiting your GP/neurologist/MS Specialist Nurse

    Getting the most out of your visit

    • Ask for an explanation of any words that you don’t understand –
    including illnesses, medicines, symptoms or treatments.
    • Ask what results you can expect from any drugs, therapies or medications given to you. Should you expect only a little or a more significant change in your condition? When should these changes occur?
    • Ask about any other options that you might have and their advantages or disadvantages.
    • Ask about side effects that you might have from any drugs or therapies prescribed for you.
    • Ask about any follow-up procedures. When and on what basis will you be seen next time?
    • Before a visit to your doctor, write anything down that you need to ask, noting important points that you don’t want to forget to discuss.
    • Note down important points arising from your discussions with your doctor as soon as possible. Increasingly, some doctors are
    now happy to allow you to tape record your discussions to jog your memory of what he or she said. Research has shown that having such a recording is a great help to yourself, and your family, in following a doctor’s observations or advice.
    • Keep a diary of important events or issues between visits to the doctor, so that you can discuss these at your next visit.

    Seeing your GP notes

    Under recent legislation all patients have the right to see their complete medical notes, and to request corrections to, or deletions of, any inaccurate material – particularly regarding comments on a patient’s attitude or state of mind. The doctor is fully entitled to either sit with you whilst you examine the notes or recover reasonable costs of providing copies (including administration costs). However, you can be refused access to notes when there is a reasonable concern that the contents may have an adverse effect on your welfare. Most doctors are very willing to comply graciously with such a request.

    Having a check-up

    The purpose of the traditional neurological check-up, for which people with Multiple Sclerosis are asked to return every 6 months or year, is gradually changing. Previously, because there was no real therapy to slow down the course of the disease, the check-up was used to monitor the speed of its progression, and to offer symptomatic and appropriate advice. Many people found this a frustrating system, for often their symptoms were as well controlled as they were likely to be, given the modest resources available, and the consultations following a routine examination frequently appeared cursory, focusing on further decline (or any newly acquired neurological problems) since the last check-up.
    However, this approach is changing, as neurologists now turn their attention far more towards assisting people to manage MS medically over the longer term, rather than largely focusing on getting the diagnosis right and seeking confirmation of that through monitoring the disease.
    Neurologists now focus far more on what is described as the ‘rehabilitative’ approach to MS, the battery of newer drugs that might affect the course of MS, and the increasing recognition of the contribution of other professions to your care. All this is changing the
    ‘check-up’ process, making it more likely to be of value to you. Often you will be seen by other specialists – perhaps specially trained nurses – as well as the neurologist; thus the increasing use of MS clinics of the drop- in variety is beginning to make the problematic ‘check-up’ experience of old a matter of the past. However, there are still areas of the country where the old system prevails, and in this case it is very important that you ensure that your questions and concerns are addressed in the consultation with your neurologist – after all it is a two-way discussion.
    It is important anyway that some periodic monitoring of your Multiple Sclerosis is undertaken, to give you further information about likely developments in the disease, and to assess your eligibility for newer drugs, or possibly trials of experimental drugs, that is if you wish to participate. In this case a neurological examination will determine, over the course of time, how many episodes of MS have occurred, how many individual areas of the nervous system have been affected, and the rate at which new areas are being affected. You may also have an MRI scan, which records similar information about changes in plaques, plaque location and severity, but which may, from your point of view, be little related to your symptoms. Your clinical history is also vital when your neurologist is dealing with any new episode of MS that occurs.

  • Team approach to management

    People with Multiple Sclerosis – and their relatives – often have questions and concerns about who is doing what when they go to see the various health practitioners.
    It is relatively clear that your GP is medically responsible for your routine day-to-day health care. In the first instance you would normally go to your GP for advice about any symptoms, or other issues that concern you, even if they are not symptoms of Multiple Sclerosis. Most GPs will refer you on clinical grounds to support services for people with MS, often in the practice itself, such as nursing, counselling and, possibly, physiotherapy. Some larger general practices are also setting up multidisciplinary support clinics for patients with long-term conditions that, although not specifically targeted to MS, could be of value to people with the disease.
    Once you have been referred to, and then been diagnosed by, a consultant (usually a neurologist), you would automatically become his or her patient as well in several ways:

    • You will have hospital records with notes and records of your condition and, initially, you will be down as being under the care of the neurologist concerned.
    • Most neurologists will want to assess you periodically – traditionally every 6 months – to evaluate how your MS is developing.
    • Many neurologists are involved directly or indirectly in clinical
    trials for new therapies for the disease or its symptoms, and they may invite you to participate in such trials, which will involve further regular monitoring or assessment (see Chapter 18).
    • Particularly with the advent of beta-interferons and glatiramer acetate, possibly with certain other drugs, neurologists now have a special clinical role in dispensing them and monitoring their use.
    • Both for clinical and economic reasons, hospitals are increasingly setting up MS clinics, and/or multidisciplinary support services for people with MS.

    So, in principle, someone with MS could have an embarrassment of services, in both general practice and in a hospital setting! However, this is not usually the case. One of the major problems at present is that services are patchily distributed and relatively ill coordinated, and people with MS are having to take what is available to them. In the light of this unsatisfactory situation, the MS Society and leading neurologists have recently put together a minimum standard of service provision for people with MS, which they hope will lead to more consistent provision (see Appendix 2).
    The situation is confused because, on the one hand, specialist advice and services in relation to your Multiple Sclerosis, i.e. those usually obtained through your neurologist and the hospital, take precedence over your GP’s advice on the disease; on the other hand, your GP is responsible – as we noted earlier – for your day-to-day health care. The problem then becomes what is an MS-related problem, and what is not. Technically the GP and the specialist should be in touch with one another, informing each other of developments in relation to your health. This does not always happen efficiently.
    The best advice to you is to use whichever local services are most convenient and helpful for whatever problems you happen to have, and to press your GP and/or the consultant as necessary for other services that you feel have not been offered. To be frank, what most people with MS have found is that their GP is helpful, supportive and accessible, but is often not particularly knowledgeable about MS, and that the consultant is knowledgeable but not as supportive or as accessible as the GP. The advent of MS clinics with other professional staff, such as nurses, as primary advisers may provide more support in due course.
    The idea of a ‘team approach’ to Multiple Sclerosis has gained considerable ground in recent years and most neurologists and hospitals support it. In the previous (‘non-team’) approach, a doctor, usually the neurologist, might have referred you independently occasionally for separate professional services, e.g. physiotherapy, occupational therapy, speech therapy or
    nursing. People with MS often found this a problem in that each professional dealt with them independently; there seemed to be little communication between the different services, and no single person to whom they could turn for an overall view, apart from the neurologist who was not always accessible. You may be lucky in that you have access to an MS Specialist Nurse – their numbers are rising regularly.
    The team approach, although it may have developed dif ferently in different hospitals, is designed to provide a more coordinated approach to the management of MS. Following your initial assessment, team meetings will be held between the professionals, sometimes involving you and/or your family. These meetings lead to the development of a management strategy of MS. The idea is that this should centre on your problems. Sometimes one professional person is appointed to liaise with you, as the first point of contact. Teams may involve the neurologist, a nurse, a physiotherapist, a speech therapist, an occupational therapist, a counsellor, an Multiple Sclerosis Specialist Nurse and possibly others.
    In general, the move to a team approach has been helpful for people with MS, but problems of coordination between the professions still continue to exist, especially in the community. Sometimes you may be somewhat confused by the large number of professional staff you come into contact with. If you can establish one main person for contact – no matter what their professional discipline – it is very helpful. Note that many hospitals are still underfunded, and the team approach in itself will not lead to a change in that aspect, but they might be used more efficiently. In addition, there are often coordination problems between social services departments and other non-health-based support sources.

  • Getting more information on drug therapy

    Side effects of drugs

    Because drugs have powerful effects on a condition, they can also have powerful side (that is, unwanted) effects on other things. It is a good idea to be informed about the possible side effects of the drugs that you are taking; you will be able to assess the balance yourself between the effects and the side effects, and you will be alerted sufficiently to inform your GP, neurologist or MS Specialist Nurse about them, if they are worrying you.
    Your medical practitioner (GP, neurologist or MS Specialist Nurse) should discuss possible side effects with you when your drug(s) are prescribed, including any side effects from combining two or more drugs. If your GP does not, you should ask explicitly about this issue. If you are still unclear or concerned, the pharmacist where you get your prescriptions has expert knowledge about drugs and their effects, and should be willing to answer questions about them. Furthermore, they can inform you about over-the-counter drug therapies that you may purchase, and their potential side effects and interactions with other drugs.
    Several organizations (including the Consumers’ Association and British Medical Association – see Appendix 1) publish excellent family health guides that contain detailed and up-to-date information about drugs and other treatments. It is vital that you use a British edition of any guide, as brand names are frequently changed from country to country. Some titles are included in Appendix 2 at the back of this book.

    Combination therapy

    Beta-interferon or glatiramer acetate and steroids can be taken at the same time but only after careful assessment by your neurologist. Even if you are taking beta-interferon 1b or beta-interferon 1a or glatiramer acetate, you may have a relapse, but probably to a lesser degree than you would have done without the treatment. In this situation, you may well be offered steroids – possibly a combination of methylprednisolone and prednisolone. The objective is to provide an additional means of reducing the inflammation, despite the use of beta-interferons, and reduce your symptoms.