WHAT IS MS?

MS is thought to be an autoimmune disease that affects the central nervous system (CNS), which is made up of the brain, spinal cord, and
optic nerves. In MS, the immune system, which usually works to protect the body, mistakenly starts to attack the body’s own tissue. The primary target of this attack is thought to be myelin, the protective coating around the nerve cells in the CNS that facilitates nerve conduction. The nerve cells themselves can also be damaged. The attacks on myelin produce ‘scarring’ or ‘plaques’ at multiple sites in the CNS, and it is these scars that give the disease its name. These scars, in turn, begin to slow or interrupt the transmission of nerve impulses, resulting in the symptoms of MS.

WHAT CAUSES MS?

We do not yet know the answer to this question. The current hypothesis is that the disease appears in those individuals who have a genetic
predisposition to react to some infectious agent in the environment such as a virus or bacterium. This means that the disease is not genetically transmitted in the same way as hair or eye colour, for example. There seems to be a combination of genes that makes one person more susceptible to the infectious agent(s) than someone else with a different genetic makeup. While several different viruses and bacteria have been studied for their possible role in MS, the trigger(s) have not yet been found. Environmental and psychological factors may play a part that we do not yet understand. We do know, however, that MS is not a contagious disease and you do not need to be concerned about transmitting MS to those around you.

WHAT HAPPENS WHEN A PERSON GETS MS?

Wrongly programmed immune cells enter the CNS, causing inflammation in the brain, spinal cord, and/or optic nerves. It is this inflammation that can cause damage to the protective myelin coating around the nerve cells, producing scars (also called plaques or lesions) that interfere with nerve transmission. While many of these scars may have no apparent effect, others are responsible for the various symptoms of MS. Each person’s symptoms will vary depending on the particular location(s) where the scarring (demyelination) occurs.
The possible symptoms of MS include: fatigue, changes in vision, stiffness, weakness, imbalance, sensory problems such as numbness, tingling, and pain, changes in bladder and/or bowel function, sexual changes, emotional changes, speech difficulties, and problems with thinking and memory. Fortunately, most people develop only a few of these symptoms over the course of their MS, and most are able to manage their symptoms with assistance and support.

UNDERSTANDING & MANAGING COGNITIVE, EMOTIONAL & BEHAVIOURAL CHANGES IN MULTIPLE SCLEROSIS

For people with MS, their families, carers, friends, and health & disability service providers

What is cognition?  What does it actually mean?  How do I know if I, or the person with Multiple Sclerosis (MS) that I care about, has cognitive problems?  What can be done about it?  What is the incidence of cognitive problems in people with MS?

This book aims to provide the answers to these and many other questions you may have.  It is written for people with MS, their families, carers, friends, employers, colleagues and health professionals.  In fact, anyone with an interest in MS will hopefully find this book useful.

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An overview of the contents

Chapter One:	Cognition
Chapter Two:	Changes in thinking, memory and problem solving
Chapter Three:	Mood and personality changes associated with MS
Chapter Four:	The impact of cognitive, behavioural and emotional changes on family members
Chapter Five:	Issues and management strategies for paid carers to remember
Chapter Six:	Issues regarding decision making for the person with cognitive change, their family and others
Chapter Seven:	Practical examples of aids and techniques to assist management of cognitive change
Glossary	Explanation of terms used in this book
Bibliography	References used in writing this book

The book is designed to keep all the information about MS and changes in thinking and feelings in the one place, so it contains lots of information that may not be relevant to everyone. 

People with MS can typically experience one of four disease courses, each of which might be mild, moderate, or severe.

• Relapsing-Remitting MS

  People with this type of MS experience clearly defined attacks of worsening neurologic function. These attacks—which are called relapse or exacerbations —are followed by partial or complete recovery periods (remissions), during which no disease progression occurs. Approximately 85% of people are initially diagnosed with relapsing-remitting MS.

• Primary-Progressive MS

  This disease course is characterized by slowly worsening neurologic function from the beginning—with no distinct relapses or remissions. The rate of progression may vary over time, with occasional plateaus and temporary minor improvements. Approximately 10% of people are diagnosed with primary-progressive MS.

• Secondary-Progressive MS

  Following an initial period of relapsing-remitting MS, many people develop a secondary-progressive disease course in which the disease worsens more steadily, with or without occasional flare-ups, minor recoveries (remissions), or plateaus. Before the disease-modifying medications became available, approximately 50% of people with relapsing-remitting MS developed this form of the disease within 10 years. Long-term data are not yet available to determine if treatment significantly delays this transition.

• Progressive-Relapsing MS

  In this relatively rare course of MS (5%), people experience steadily worsening disease from the beginning, but with clear attacks of worsening neurologic function along the way. They may or may not experience some recovery following these relapses, but the disease continues to progress without remissions.

Since no two people have exactly the same experience of MS, the disease course may look very different from one person to another. And, it may not always be clear to the physician—at least right away—which course a person is experiencing.

Source: Multiple Sclerosis International Federation (2009)

Multiple sclerosis is a very variable condition and the symptoms depend on which areas of the central nervous system have been affected. There is no set pattern to MS and everyone with MS has a different set of symptoms, which vary from time to time and can change in severity and duration, even in the same person.

There is no typical MS. Most people with MS will experience more than one symptom, and though there are symptoms common to many people, no person would have all of them. Common symptoms include:

Visual problems

• blurring of vision
• double vision (diplopia)
• optic neuritis
• involuntary rapid eye movement
• (rarely) total loss of sight

Balance & co-ordination problems

• loss of balance
• tremor
• unstable walking (ataxia)
• giddiness (vertigo)
• clumsiness of a limb
• lack of co-ordination
• weakness: this can particularly affect the legs and walking

Spasticity

• altered muscle tone can and muscle stiffness can affect mobility and walking
• spasms

Altered sensation

• tingling
• ‘pins and needles’
• numbness (paraesthesia)
• burning sensations

Pain

• muscle pains
• facial pain (such as trigeminal neuralgia)
• stabbing sharp pains
• burning tingling pain

Abnormal speech

• slowing of speech
• slurring of words
• changes in rhythm of speech
• difficulty in swallowing (dysphagia)

Fatigue

• A debilitating kind of general fatigue which is unpredictable or out of proportion to the activity. Fatigue is one of the most common (and one of the most troubling) symptoms of MS.

Bladder & bowel problems

• Bladder problems include the need to pass water frequently and/or urgently, incomplete emptying or emptying at inappropriate times.
• Bowel problems include constipation and, infrequently, loss of bowel control.

Sexuality & intimacy

• impotence
• diminished arousal
• loss of sensation

Sensitivity to heat

• this symptom very commonly causes a transient worsening of symptoms

Cognitive & emotional disturbances

• loss of short term memory
• loss of concentration, judgment or reasoning

Whilst some of these symptoms are immediately obvious, others such as fatigue, altered sensation, memory and concentration problems are often hidden symptoms. These can be difficult to describe to others and sometimes family and carers do not appreciate the effects these have on the person with MS and on employment, social activities and quality of life.

Source: Multiple Sclerosis International Federation (2009)

Some quick facts about MS you may not know...

• MS is a progressive disease of the nervous system, for which there is no cure.
• An estimated 2,500,000 people in the world have MS.
• More women than men have MS, with a ratio of 2 men to 3 women affected.
• MS is the most common diseases of the central nervous system in young adults.
• There are four types of MS: relapsing remitting, secondary progressive, primary progressive and progressive relapsing.
• Sclerosis means scars, these are the plaques or lesions in the brain and spinal cord.

The cause of multiple sclerosis is not yet known, but thousands of researchers all over the world are meticulously putting the pieces of this complicated puzzle together.

The damage to myelin in MS may be due to an abnormal response of the body's immune system, which normally defends the body against invading organisms (bacteria and viruses). Many of the characteristics of MS suggest an 'auto-immune' disease whereby the body attacks its own cells and tissues, which in the case of MS is myelin. Researchers do not know what triggers the immune system to attack myelin, but it is thought to be a combination of several factors.

One theory is that a virus, possibly lying dormant in the body, may play a major role in the development of the disease and may disturb the immune system or indirectly instigate the auto-immune process. A great deal of research has taken place in trying to identify an MS virus. It is probable that there is no one MS virus, but that a common virus, such as measles or herpes, may act as a trigger for MS. This trigger activates white blood cells (lymphocytes) in the blood stream, which enter the brain by making vulnerable the brain's defence mechanisms (i.e. the blood/brain barrier). Once inside the brain these cells activate other elements of the immune system in such a way that they attack and destroy myelin.

Source: Multiple Sclerosis International Federation (2009)