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

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

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

Progression of symptoms

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

Symptoms that can catch you unawares

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

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

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

Outlook

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

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

Management of symptoms

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

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

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