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.

  • Related problems

    For most younger people (those in their 50s and below), the urinary symptoms caused by Multiple Sclerosis will probably be far more significant than those arising from other causes, and thus the focus should mainly be on these. However, there are some circumstances that may be associated with an increased likelihood of urinary problems.

    Men and prostate problems
    As men get older, some have problems from prostate gland enlargement. This gland surrounds the neck of the bladder and the beginning of the urethra. By the age of 60, it is enlarged in some 60% of men, and the proportion increases even more with age. Very often, the symptoms of an enlarged prostate develop slowly, but as they can echo some urinary symptoms caused by MS – particularly increased urinary frequency, urgency and nocturia – it may be difficult to separate the causes without investigation. As with other symptoms, it is important that specific causes are found, if possible, so that they can be appropriately managed. As the life expectancy of people with MS increases, more men may find that an enlarged prostate gland makes some of their urinary symptoms worse.

    Childbirth
    Recent research has also shown that urinary problems may occur earlier in life for some women following a difficult or problematic childbirth. The control of urination is a frequent minor problem following childbirth. It is not clear how such problems interact with
    those of MS. However, many techniques of management indicated in this section can be used, although it would be wise for women who feel their pregnancy and childbirth has affected their bladder control to seek professional help and advice.

  • Managing urinary symptoms

    The management of urinary symptoms can take various forms, depending on the diagnosis of the problem. In most cases initially this can result in a combination of strategies including:

    • lifestyle changes (changing your everyday routines)
    • specific exercises and bladder training
    • using a continence product (e.g. absorbent pads) occasionally or regularly
    • taking appropriate prescribed drugs.

    In relation to more serious urinary symptoms, additional measures may be necessary including:

    • catheterization – either intermittent self-catheterization, or on occasions a more permanent indwelling catheter
    • surgical intervention.

    Problems of frequency and urgency
    These are two of the most troubling symptoms for people with MS. The issue of urinary urgency, often combined with wanting to urinate more frequently is one of the most difficult problems for people with MS earlier in the disease. It is usually caused by the bladder not storing the urine properly, or a lack of coordination between the storage and emptying process. It is wise to plan ahead whenever you leave home, and ensure that there are always toilet facilities within easy reach, but there are other aids.
    As a self-management technique, pelvic floor exercises help to tone the muscles in and around your urinary system. This is sometimes called
    ‘bladder squeezing’ and helps to decrease frequency and urgency problems in some people. As a general rule, exercising your pelvic floor muscles is a very good idea, although other help may well be required. If the frequency and urgency continues to be a problem, which they may well do so, you may have to turn to drugs.
    In effect many of the drugs which are used ‘slow’ the bladder by decreasing the transmissions to the nerves causing the bladder to empty. Oxybutin chloride (Ditropan) is an ‘anticholinergic’ drug that, in effect, blocks the nerve signals that trigger the muscles to release urine. This can be very effective, but is also associated with side effects, such as a dry mouth, because the drug blocks the nerve signals to the salivary glands as well. Indeed, without a dry mouth, it may be that the dose is too low. Unfortunately, you may become constipated, and at very high doses there may be problems with your sight. Often you have to experiment under the guidance of your doctor to find the most appropriate dose level controlling frequency and urgency with minimal other side effects. Another anticholinergic drug, propantheline, can be used, although trials have shown it to be slightly less effective than oxybutin. An antidepressant such as imipramine (Tofranil) may also be prescribed – not for depression, but because it has been found to have an effect in controlling urgency.
    More recently, a drug called capsaicin – derived from red chilli peppers
    – has been found effective in people with MS with relatively serious incontinence, who might find the side effects of the anticholinergic drugs unacceptable. Although this drug is still under evaluation for long-term safety and effectiveness, it appears to provide good control for quite long periods of time, i.e. 3 or 4 months from one administration usually in a hospital. It is not yet widely available, and it appears initially to make symptoms worse rather than better, before it takes full effect. So some people have to be ‘catheterized’ (see below) for the first few days after the administration. So far, people who have used it have found it sufficiently beneficial to come back for further administrations of the drug. Other natural products like ginger have also been tried. There is a vast amount of information on the internet that can be perused, but many of the studies have not been proven scientifically.
    You may not need to take one of these drugs continuously, but you could use it for a particularly important event or journey when you need to avoid urinating for some time. For peace of mind on particular occasions, you could use a protective pad to absorb urine, in case you have ‘an accident’. As a final point, people who have urinary problems often also have mobility problems – the nerves controlling both legs and the urinary system are situated close together – so the difficulties experienced through frequency and urgency are often compounded.

    Nocturia
    Another problematic symptom for many people with MS is that they may have to get up to urinate several times in the night. Nocturia, as this problem is known, is quite common. The usual medication for nocturia is desmopressin (DDAVP Nasal Spray) which reduces urine formation. There are some circumstances where the drug should be used only very cautiously, or not at all – for example, in people with kidney or heart disease, or in older people. The antidepressant, imipramine (Tofranil), mentioned above in relation to treating urgency and frequency, taken just before going to bed, has also been found to be effective in many cases.

    Incontinence
    Incontinence, what appears to be the involuntary release of urine, may be a slight and an occasional problem in MS, or it may prove to be a continuous problem. However, in each case it provokes anxiety and concern, for socially as much as physically it can be a difficult and embarrassing symptom to have occur unexpectedly. This can be caused by a number of separate problems. Bladder spasms may be causing this difficulty – technically called ‘incontinence’ – or your bladder muscle
    may be so weak that you have released urine before realizing it. In addition, sometimes you might not at first realize that you are wet because of reduced sensations in your pubic area.
    The first step where minor and occasional incontinence is concerned is, as a means of ‘insurance’, to use a protective pad. Sanitary protection (absorbent pads) can be used, even if only for maintaining confidence when you are not near a convenient toilet. Pads and liners are available in a wide variety of shapes and styles to suit different people and different clothing styles, but there is much less choice when they are supplied on prescription. Waterproof undersheets and absorbent bed sheets can also be very convenient, to minimize the effect of occasional accidents.
    If these procedures and/or the drugs mentioned above in relation to urgency and frequency do not work, other professional investigations may well be needed to determine the cause of the problems, and how best they might be managed.

    Catheterization
    Although your major concern may be incontinence, there may also a problem with urine retention in the bladder as well – for the bladder may not completely empty, which can lead to serious infection. Thus as an extra precaution, if one of the causes of the incontinence is retention of urine in your bladder, the use of ‘intermittent self-catheterization’ (ISC) might help (Figure 4.1).

    Self-cetheterization

    Figure 4.1 Self-catheterization.

    ISC is used to ensure that the retained urine is regularly voided. Although you can do it yourself, a carer can also help you. A catheter (a thin plastic tube) is threaded through your urethra – the opening at tip of the penis, or just above the vagina – into your bladder, and this drains any remaining urine. You will need to wash yourself thoroughly before using this technique, and you may need to use a lubricant (something like K-Y Jelly) to assist the access of the tube, but modern catheters are low friction types and need no lubricant (such as
    ‘Lofric’ and ‘Speedicath’ types). You withdraw the catheter as the urine begins to stop. You should not use a catheter (tube) which appears to be worn, stiff or damaged in any way. You can do it while sitting on the toilet, or lying down. Undertaken regularly, several times a day, this method usually helps substantially. A nurse or doctor will explain how to undertake this procedure, and how to clean the catheter thoroughly. For the most part, although the procedure may seem very difficult, many people adapt well to it, as long as it is seen as a routine process. If you are able to write and to feed yourself, even if you have some eyesight problems, ISC should be possible. There is another reason why ISC can be of value, in that regularly undertaken, it is a means of ‘training’ the bladder to fill and empty as the urine is released: the bladder muscle contracts, expanding again as urine fills the bladder.

    Urine retention and voiding problems
    As we have noted above, many people with MS have problems not only with urgency or frequency, but also with some urine retention in the bladder. If this is the case, do not reduce your fluid intake substantially, because this will increase the risk of urinary infection (urine as a waste product is not being diluted). A useful rule of thumb is the color of your urine: if it is dark yellow to brown in colour, then almost certainly you are not taking in enough fluid.
    There are some useful guidelines which should help you:

    • Drink at least 2 litres (or just over 3 pints) of liquid a day.
    • In general, an acid urine helps keep infections at bay.
    • Decrease your intake of citrus fruits/juices.
    • Foods and substances that neutralize acidity, including antacid preparations, such as sodium bicarbonate, should be eaten less often, as should dried vegetables.
    • Increase your intake of proteins.
    • Drink cranberry juice, and eat plums and prunes regularly.
    Cranberry juice will also help to provide the vitamin C lost through reducing the intake of citrus fruits/juices.

    Hesitancy and ‘full bladder’ feeling
    Although this is a frustrating problem, often urination will start after a couple of minutes, so be patient! Sometimes tapping very lightly on your lower abdomen – but not too hard – will help; this often produces a reflex reaction of urination.
    There have recently been trials of a hand-held vibrating device which, when held against your lower abdomen if you are still sensitive in this area, seems to work quite well by increasing urinary flow and leaving less urine in your bladder. It is probably most useful for people with relatively mild MS.
    Of course, other time-honoured techniques may work, including turning a tap on and hearing the sound of running water! A more direct method is to stimulate the urethra gently, at the tip of the penis or just above the vagina, with a clean finger or damp tissue.
    If you have the feeling that your bladder is still full, this may need further investigation. It is important that your bladder is as empty as possible after you have urinated, not least to try and avoid an infection. Intermittent self-catheterization (ISC) may help, as may anticholinergic drugs. If you need further advice, make an appointment to see your doctor or, if possible, your neurologist or continence nurse/advisor.

    Urinary tract infection
    If urination is painful or associated with a burning sensation, and even more so if it smells unpleasant and is cloudy, the chances are that you have a urinary infection. In this case seek medical advice as soon as possible. In the meantime you should try and increase your fluid intake.
    Kidney infections are particularly worrying in MS: they may be associated with both abdominal pain and a high fever, and require a tougher drug approach, perhaps with intravenous antibiotics. The problem is that, once infections get a hold in the kidneys, there is a substantial risk that they pass unchecked into the bloodstream, and cause major, even on occasions life-threatening, difficulties. You may also experience increased frequency and urgency with an infection. On the other hand some urinary infections in MS can be almost symptomless, and thus periodically – and especially if you feel that you suffer from some problems of urine retention – ask your doctor if you could have a urine test for infections just to make sure.
    For people who seem particularly liable to urinary tract infections, a long-term low-dose antibiotic might be given occasionally to eliminate or suppress bacteria.

    General precautionary steps to prevent bladder infection could include:

    • Attempting to empty to bladder as often as possible – holding urine in the bladder for long periods should be avoided.
    • Women should be careful to wipe from front to back and to avoid underclothes made of synthetic materials, which can trap infection. It is also a wise precaution to empty your bladder both before and after sexual intercourse.
    • You need to ensure that you take adequate amounts of fluid (see above).
    • You might also consider taking substantial does of vitamin C because this will make your urine more acid and less liable to bacterial growth.

    Indwelling catheterization
    When urinary difficulties become a real problem, a permanent catheter can be fitted. Although some may think this is more convenient, it is not an easy step to take for many others; some actually think of it as the hidden equivalent of being in a wheelchair. Furthermore, medically, it is best if some other way can be found to manage urinary problems. An indwelling catheter opens up the inside of the body to the continual possibility of infections from which it is normally protected, even during ISC, and it can be particularly dangerous if you have a weakened immune system. Therefore, in principle, the less time that people with MS use an indwelling catheter, the better. If the MS becomes more severe, there may be no option, particularly when you cannot undertake ISC, or when drugs or other strategies do not appear to deal with the problem.
    How it works. An indwelling catheter can be inserted through the urethra (like ISC), or through a specially constructed surgical opening in the lower abdomen, above the pubic bones (‘suprapubic catheterization’). Whichever route is chosen, the catheter is inserted into the bladder, and then a small attached balloon is inflated (which you won’t feel) and filled with sterile water in the bladder itself. Through the other end, on the outside of the body, urine is continuously drained into a collection bag.
    Increasingly, the medical preference is to insert the catheter through the special opening in the lower abdomen. This is because a permanent catheter through the urethra may enlarge, change or disrupt the urethral opening, and make it difficult to maintain control of the urine. An indwelling catheter like this can cause problems with sexual activity and we deal with this elsewhere in Chapter 5. Even if a catheter is inserted through the lower abdomen, there are still likely to be some problems:

    • Infection can occur around the site of the insertion.
    • The catheter can periodically become blocked.
    • The catheter needs to be changed every few weeks, and sometimes more frequently.
    • Kidney stones can form.
    • Catheters can sometimes become detached or loosened and thus require monitoring; this has to be done by someone else if your MS is severe.

    It is important to increase fluid intake if you have an indwelling catheter to help prevent infections – these occur more frequently if you don’t drink enough.
    An indwelling catheter can be used on a temporary basis, or for particular occasions when other means of urinary control are difficult, but you need to discuss all this with your doctor or continence nurse. Each insertion runs a risk of introducing infection and it has to be undertaken as meticulously as possible.

    Surgery and urinary problems in Multiple Sclerosis
    Surgery is very rarely performed to ensure urinary control in MS – indeed it seems to offer no major improvement in such control. Several procedures are possible, but are only undertaken on rare occasions when almost all else has failed, and a more or less intractable problem remains. There is another factor here: MS, over time, is a progressive disease, and it is possible that once you have undergone some surgery, other surgical procedures may then be needed later, to manage further problems that might arise.

    Other management techniques
    In addition to trials of further drugs that may be of value to people with MS, some other procedures or techniques may help. Research has suggested that bladder training – involving working out a schedule of regular urination on the basis of ultrasound assessments – together with ISC, may be helpful. Because of the association between CNS control of leg function and urinary function, an appropriate exercise regime may help the urinary function indirectly.
    Bladder training generally involves a series of educational and training exercises. It is important to note that some substances such as caffeine and alcohol can cause additional urgency with frequency, as can one of the common artificial sweeteners – Nutrasweet. Eliminating these products may help substantially. Training may involve you resisting or trying to slow down the urge to urinate so that urination
    can be undertaken more on a kind of timetable, perhaps every 1–2 hours. Urination can also be partly controlled by how and when drinks are taken.
    Electrical stimulation of various kinds comes into vogue from time to time to help with urinary control. A few of these techniques, some of which use small portable instruments, may prove to be of some value:

    • TENS (transcutaneous electrical nerve stimulation)
    • DSCS (dorsal spinal cord stimulation)
    • ESES (epidural spinal electrostimulation), and
    • SES (spinal electrostimulation).

    There is considerable energy being devoted to developing and testing some of these procedures. All these can be discussed with your continence nurse.

  • Diagnosing a bladder problem in Multiple Sclerosis

    The most helpful information for a doctor or other health professional to assist in diagnosing your problems is a brief history of any bladder symptoms you may have, for example:

    • What is your major concern about your bladder/urination?
    • How often do you urinate during the day/night?
    • Do you leak when you laugh, or cough, or do you have an accident? How often? In what circumstances?
    • Do you find it hard to begin urinating? Do you feel that you empty your bladder?
    • Do you wear pads or protection? If so how often?
    • When and how often have you had kidney infections?
    • Do you have pain on urinating or blood in your urine?
    • Have you had any formal investigations before, or are you taking any medications?

    If responses to these questions suggest the existence of bladder problems, then it is likely that you will asked to take some tests.

    Tests
    Increasingly there are different tests being used to determine more accurately what the exact problem is. Your GP will probably only undertake
    tests for urinary tract infections, and it will be your neurologist who may refer you to specialists, e.g. a urologist, for other tests, if necessary. The two most significant tests assess:

    • urinary tract infection, and
    • control of urinary flow.

    Tests for urinary tract infection. Doctors are recognizing that urinary tract infections are an increasing problem for people with MS and often associated with retention of urine in the bladder. However, it is important that you ask your doctor to undertake such tests regularly. If your doctor suspects that an infection is present, a ‘mid-flow’ sample of your urine is normally requested and, after the specimen has been
    ‘cultured’ to identify the particular bacteria present, you will be prescribed the most appropriate antibiotic.
    Tests for urinary flow. More and more sophisticated tests, known as
    ‘urodynamic’ tests, are being developed to measure ‘urinary flow’. A more recent test investigates this flow and the amount of urine remaining in the bladder after urination by taking a non-invasive ultrasound picture of your bladder. Of particular importance is the measurement of the amount of urine remaining in the bladder after you have urinated – it is this residue that can give rise to infection. This overall test, called an ‘ultrasound cystodynogram’ (USCD), is gradually replacing one that measures the rate of flow or urine by the introduction of a
    ‘catheter’ (a thin tube) through your urethra (the opening in your body from where urination occurs) to your bladder. The remaining urine then flows out and can be measured. To obtain additional information, further ultrasound pictures might be taken of your kidneys. Very occasionally, a far more intrusive investigation – ‘cystometry’ – is performed, usually only in very rare cases indeed, to allow the examination of the inside of your bladder (almost as a final resort after all other methods have been tried with no success), and when surgery is being considered. Surgery is rarely, however, considered for urinary problems in MS, for it is often associated with a range of side effects and difficulties.

  • Bladder control

    This is one of the most difficult issues to deal with in MS, despite being a very common symptom. Research has suggested that between 80–90% of people with MS have urinary problems of some kind, although they vary widely in type and seriousness. More expertise and resources are now being devoted to dealing with it.
    If particular nerves in the spinal cord are damaged by Multiple Sclerosis, then urinary control will be affected. There are several kinds of urinary control in people with MS that might then be affected:

    • They may urinate involuntarily – either just dribbling a little, or sometimes even more (a problem of ‘incontinence’).
    • They may wish to urinate immediately (a problem of ‘urgency’).
    • People may wish to urinate more often than before (a problem of frequency). When people have frequency at night, i.e. needing to urinate several times during the night, it is called ‘nocturia’.
    • They may fail to empty their bladder (a problem of ‘voiding’).
    • They may find it difficult to begin to, or to continue to urinate (a problem of ‘hesitancy’).

    The major bladder problems in Multiple Sclerosis can be summarized as either:

    • a failure to store
    • a failure to empty, or
    • a combination of both.

    In general the more serious the MS, the more serious your urinary symptoms are likely to be. About 65% of people with urinary problems have difficulties with urgency, or frequency and incontinence resulting from urgency. About 25% have difficulties in relation to urine retention and bladder emptying, and the remaining 10% may have both sets of problems.
    Whilst many of the common urinary problems above that people with MS experience are indeed a result of damage to the nervous system caused by the disease, others may be caused by ‘urinary tract infections’. Urinary tract infections are not caused directly by the MS itself, but are more likely in people with MS because of some of its functional effects – for example through infections from a failure to empty the bladder. Thus it is very important that you are regularly tested for urinary infections. This is particularly important if the bladder problems you have are significant.

  • Problems with urination and bowels

    Urinary and bowel function problems probably cause the most inconvenience to a person with MS. They can be embarrassing to cope with and may be the ones most difficult to discuss with your doctor. As such symptoms in MS are likely to result from damage to the spinal cord, they may also be associated with sexual dysfunction as well as other symptoms such as weakness and spasticity.

  • 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.