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Module 2

D i agnos is

Seco n d edi t i o n
Co n t r i b u t i o n s by : E m m a C h r i s t i a n ,
Jen n i fer Co l em an an d M el an i e M c M u r tie
Rev i ewed by : Jen n i fer Co l em an an d S u e S h a p l a n d

Fi r s t edi t i o n

- Di agn osis
Co n t r i b u t i o n s by : Pe n n y M a r t i n , S u re k h a M i s t r y,
L o u i se Rat h an d Su z an n e Van se l ow

Module 2
2. Diagnosis
Module overview
This module contains seven sections:

Section 1: Clinical Presentation

Section 2: Paraclinical Investigations

Section 3: Diagnostic Criteria & Categories

Section 4: Identifying MS Relapse

Section 5: Quantitative Clinical Measures

Section 6: Paediatrics

Section 7: Newly Diagnosed MS

Introduction
Despite advances in technology, the most important requirement in determining a diagnosis of multiple sclerosis
(MS) is the evaluation, ideally by an experienced neurologist, of a person’s history and clinical presentation.1
Diagnosis is heavily reliant on the skill of the neurologist in taking and interpreting the person’s medical history,
conducting a neurological examination and interpreting magnetic resonance imaging (MRI) and other paraclinical
evidence – including that obtained from lumbar puncture and evoked potentials.

A diagnosis of MS requires evidence of lesions that occur in more than one site in the central nervous system
(ie they are disseminated in space) together with evidence that these lesions have emerged at different times (ie they
are disseminated in time). This may be exhibited clinically or paraclinically. Differential diagnoses are systematically
considered in order to fulfil the diagnostic criterion that a more likely diagnosis should not account for the findings.1

It is appropriate to conceptualise a diagnostic phase as all the necessary evidence is accumulated and processed.
A diagnosis of MS (or potential diagnosis) evokes an array of emotional responses, such as shock, fear and grief.

The role of the MS nurse is, effectively, to ease the person’s movement through this emotional roller coaster. With
timely provision of advice, support, education and counselling, the MS nurse plays a crucial role throughout the
diagnostic phase. The contents of this module will equip the MS nurse with knowledge to facilitate and enhance
this role.

Module 2 - Diagnosis 28
2.1 Clinical Presentation

Introduction
The clinical presentation of MS can present a number Learning Objectives
of diagnostic challenges to the clinician. There is no
single sign or symptom that is specific to MS and, After completing this section, the
to further complicate matters, there are a variety reader will be able to:
of presenting symptoms. In the early stages of the
disease, MS signs and symptoms are frequently • Understand what the neurologist
transitory and, therefore, may not be readily detectable is looking for when they meet a
by the clinician. Diagnosis of MS is dependent on person suspected of having MS
the thorough evaluation, ideally by an experienced
neurologist, of clinical, radiological and laboratory • Describe some of the signs and
findings. Overall, the classical MS diagnostic criteria symptoms of people with MS
that are applicable are evidence that lesions in the
• List some of the differential
central nervous system (CNS) are:2
diagnoses
1. Disseminated in time
2. Disseminated in space
3. Attributable to no more likely diagnosis • Involuntary eye movements (nystagmus), difficulties
in articulating speech, and swallowing problems are
evidence of a brain-stem lesion

2.1.1 History-taking and • Spastic paraparesis is evidence of a spinal lesion


• Pain or altered perceptions of touch, or position,
neurological examination suggest impaired sensory functioning
The assessment of a person for a diagnosis of MS • Bowel and bladder function disturbances suggest
begins by taking a detailed medical and psychosocial spinal lesions
history. A neurological examination is then performed. • Mood and intellectual capacity reflect cerebral
These processes may identify characteristic signs and function and also refer the person for paraclinical
symptoms, which can be taken as evidence of lesions investigations.
in specific functional systems of the CNS:
• Visual disturbances, such as unilateral loss or impaired
sight and pain behind the eye are evidence of an
optic-nerve lesion
• Muscle weakness and paralysis of one or more limbs
are termed pyramidal symptoms, and are evidence of
a pyramidal-tract lesion; abnormal reflexes may also
indicate pyramidal-tract lesions
• Unsteadiness of gait or poor coordination (cerebellar
symptoms) are evidence of a lesion in the cerebellum

Module 2 - Diagnosis 29
2.1.2 Differential diagnoses
Other more likely diagnoses must be excluded in
reaching a diagnosis of MS. Neurological conditions
that may mimic MS include migraine and neuropathies
such as such as Chronic Inflammatory Demyelinating
Polyneuropathy (CIDP). Differential diagnoses are
not limited to the nervous system and encompass,
for example, vascular diseases such as stroke
and vasculitis, and other autoimmune diseases
such as Sjogren’s syndrome and systemic lupus
erythematosus (SLE).3

Evaluation, by the neurologist, of the person’s clinical


presentation will determine the need for and type of
paraclinical investigations which may be appropriate.

Module 2 - Diagnosis 30
2.2 Paraclinical Investigations

Introduction
It is possible for MS to be diagnosed solely from clinical Learning Objectives
findings. Paraclinical investigations, however, can be
employed when added certainty is desired or when a After completing this section, the
diagnosis is unclear. Three categories of investigation reader will be able to:
are commonly employed to complement the clinical
picture, these being radiological (magnetic resonance • Explain the roles of MRI and MRS
imaging) electro-physiological (evoked potentials) and
• Discuss the role of evoked
immunological (cerebrospinal fluid).4
potentials

• Understand the rationale behind a


2.2.1 Magnetic resonance cerebrospinal fluid test
imaging (MRI)
MRI is used both for diagnosing and monitoring MS,
If there are brain lesions on MRI, a person has a
and its use is increasing as MRI technology advances.
greater than 50% chance of developing MS; a person
MRI uses a strong magnetic field and radio waves to
with four or more lesions has a greater than 90%
visualize internal body tissues such as the brain and
chance of developing MS within 5 years; and a person
spinal cord. Manipulation of the timing and reading of
with a normal MRI scan has a less than 20% chance
radio waves and signals produces the so-called T1- and
of developing MS.6 The brain stem and peri-ventricular
T2-weighted images of the brain and spinal cord which
areas are the most common sites of MS lesions
aid MS diagnosis and monitoring.
in the brain.
T2-weighted images reveal pathological changes but
It is known that normal brain MRI scans are found
do not show if these are due to inflammation, oedema
in 5% of people with MS. According to Palace,8 this
or demyelination; nor do they distinguish between old
is more likely in people with mild or early relapsing-
and new lesions. T1-weighted images can reveal ‘black
remitting disease. In primary-progressive disease, there
holes’ which are lesions resulting from extensive tissue
is a likelihood that the brain MRI may be normal as this
destruction. On a T1-weighted scan, intravenously
type of MS predominately affects the spinal cord. It is
injected contrast medium, gadolinium (Gd), will cross
not unusual therefore, for both brain and spinal MRI
a damaged blood-brain barrier and enhance acute
scans to be carried out during the diagnostic phase.1,9
inflammatory lesions. In this way recently formed lesions
can be distinguished from pre-existing ones; thus Although there is some correlation between MS
providing evidence of dissemination in time. relapses and the appearance of new lesions on
MRI,10 it is also accepted that MRI scans may detect
MRI may predict the risk of developing MS.
many more lesions than are apparent through clinical
Longitudinal studies of people who presented with a
examination.11
single episode of optic neuritis have shown that initial
MRI-lesion number and load correlate strongly with
both the risk of developing MS and future disability.6,7

Module 2 - Diagnosis 31
This demonstrates that CNS lesions can form without
2.2.4 Cerebrospinal
causing detectable signs or symptoms, and highlights
the capacity of MRI to provide a more sensitive marker fluid testing
for disease activity than the logging of relapses or new
Laboratory testing of cerebrospinal fluid (CSF)
symptoms.12 However, the relationship between MS
obtained through lumbar puncture will reveal evidence
lesions and the accumulation of impairment and the
of abnormal immunoreactivity within the nervous
development of disability is poor.13 This is particularly
system of at least 95% of people who have MS. CSF
evident in people who have primary-progressive MS,
abnormalities include elevated immunoglobulin (IgG)
where there are few lesions seen on MRI, yet there is a
levels, increased IgG synthesis rate, and oligoclonal
steady accumulation of disability.
bands. A person is considered positive for CSF
oligoclonal bands when bands are present in the
CSF that are not also present in the blood serum. It
2.2.2 Magnetic resonance is important to note, however, that oligoclonal bands
and elevated CSF IgG are not MS-specific and may be
spectroscopy (MRS) present in a number of other neurological conditions.4
MRS can be used to detect cell damage in brain tissue
that appears normal in MRI images. It does so by
detecting reduced levels of N-acetylaspartate (NAA) Acknowledgment
– a finding that indicates damage to nervous tissue. Allen Burton, Radiographer-Manager, Department
Loss of NAA is not confined to damage caused by of Radiology, Austin Health, Victoria is acknowledged for the
advice and information he contributed to this section.
MS, so the current role of MRS in MS tends to be as a
research tool.14,15

2.2.3 Evoked potentials


MS affects the speed of nerve transmission:
demyelination slows the conduction of nervous
impulses. Evoked-potential tests are used to detect this
delayed conduction, thus demonstrating demyelination.
The evoked potentials measured can be visual (using
an alternating black and white checkerboard pattern
as stimulus), auditory, or somato-sensory. The optic
nerve is frequently affected in MS, either clinically (optic
neuritis) or sub-clinically and, of the evoked potentials,
visual evoked potentials (VEPs) contribute the most in
the diagnosis of MS.8

Abnormal VEPs can supplement information about


a person who is suspected of having MS by
demonstrating demyelination of the optic nerve. When
lesions have been demonstrated in other parts of the
CNS, abnormal VEPs may confirm the diagnosis. The
role of evoked potentials in diagnosing MS is their
capacity to provide objective evidence of dissemination
of lesions in time and space.1

Module 2 - Diagnosis 32
2.3 Diagnostic Criteria
& Categories
Introduction
The lack of a single test or clinical feature that can Learning Objectives
be entirely attributed to MS means there has been
a need to develop diagnostic criteria to assist the After completing this section, the
neurologist in making the diagnosis. Schumacher 16
reader will be able to:
established the first formal criteria, which were later
updated by Poser et al in 1983.17 The Poser criteria • Learn about the various criteria that
pre-dated comprehension of the value of MRI data have been used
in MS diagnosis and did not, therefore, mention MRI
in any significant detail; nor did the criteria account
• Understand the McDonald criteria
for the diagnosis of primary-progressive MS (PPMS). • Describe the revisions to the
Subsequent increase in knowledge of both the
McDonald criteria
disease process involved in MS and of MRI scanning
led McDonald et al1 to again revise the diagnostic
criteria for MS and simplify earlier classifications.
The McDonald criteria published in 2001 have been
validated in further studies18 and revised9 to facilitate
further diagnostic efficiencies.

2.3.1 Clinically definite MS


Clinically definite MS requires two attacks (at least 24
hours in duration, at least 1 month apart) and clinical
evidence of lesions in two places. The evidence can
be obtained from examination or history. Alternatively,
one of the two lesions can be evidenced by paraclinical
investigations (MRI or evoked potentials).17

Module 2 - Diagnosis 33
2.3.2 McDonald Criteria
McDonald Criteria1 use clinical, laboratory and MRI
data to arrive at a diagnosis of MS (Tables 2-1 and
2-2). At the end of diagnostic work-up for MS, under
these criteria, the patient will either have:
• M S
• Possible MS (MS has not been confirmed, nor has
it been excluded. The diagnostic issue is still open,
awaiting evidence of dissemination in time and space)
or
• Not MS (the diagnostic work-up has ruled
out MS)

Table 2-1. The McDonald Diagnostic Criteria.1


Clinical presentation Diagnostic criteria
Two or more attacks plus clinical The clinical presentation is sufficient to make a diagnosis of MS.
evidence of two or more lesions.

Two or more attacks plus clinical There must be evidence of a second lesion in the brain or spinal cord.
evidence of one lesion. This could come from an MRI, a combination of MRI and CSF analysis,
or another clinical attack. One attack, objective clinical evidence of two or
more lesions. The two lesions must be shown to have developed at least
three months apart from each other, or there must be clear evidence of a
second clinical attack.

One attack, objective clinical evidence There must be evidence of at least two lesions, or a second attack to
of one lesion. confirm diagnosis.

Insidious neurological progression This is the most difficult presentation for diagnosis and a combination of
suggestive of MS. tests carried out over time is required, these include MRI, CSF, and VEP.

Table 2-2. Revisions to the McDonald Diagnostic Criteria (for other revisions see orginal reference).9
Clinical presentation Diagnostic criteria
When there are no clinical attacks and There must be one year of disease progression plus two of the following:
one objective lesion (i.e. progression positive brain MRI, positive spinal cord MRI or positive CSF.
from the outset).

Module 2 - Diagnosis 34
2.3.3 Clinically Isolated The revised McDonald Criteria are now as follows:9
• Continued progression for one year
Syndrome (CIS)
AND
Clinically Isolated syndrome (CIS) is a single clinical
• Two of the following:
event that can be attributed to demyelination. A CIS
may be: i) nine or more T2 lesions in the brain OR four
or more T2 lesions with positive VEP
• Monofocal – referable to one single site in
the CNS (dissemination in space or time not ii) two or more focal T2 lesions in the spinal
demonstrated). cord

• Multifocal – referable to a number of sites in the iii) positive CSF


CNS (dissemination in time not demonstrated).

CIS remains suggestive of MS until dissemination in


space and time can be demonstrated.

The most common CIS presentations are:


• Optic neuritis
• Long tract symptoms and signs
• Brainstem syndromes

2.3.4 Primary-Progressive MS
The diagnosis in patients presenting with progressive
disease takes considerable time and should only be
made after a variety of other causes are ruled out, in
particular spinal cord compression.8 The very fact that a
delay occurs in the diagnosis of this particular pattern
of the disease generally results in a clear picture of
progressive deterioration. The patient tends to be in
the more mature age range (over 50) and will generally
have signs and symptoms correlating to spinal disease.

Problems associated with establishing a diagnosis of


primary-progressive MS (PPMS) have been given
attention both in the original McDonald Criteria1 and
in the 2005 revisions.9 PPMS diagnostic criteria of the
former were derived from a research setting, whereas
those of the latter have more relevance to the
non-research clinical setting.9 Whereas positive CSF
is considered preferable, this finding is no longer an
essential component of a PPMS diagnosis.

Module 2 - Diagnosis 35
2.4 Identifying MS Relapse

2.4.1 The MS relapse


The outward manifestation of MS disease activity is Learning Objectives
the MS relapse.19 People with relapsing-remitting and
remitting-progressive MS can experience the onset of After completing this section, the
varying neurological signs and symptoms throughout reader will be able to:
the course of their disease. Such episodes, which
last for 24 hours or longer, are referred to variously as • Understand the MS relapse
relapses, attacks or exacerbations. The relapse may be
• Differentiate between a
a subjective observation from the person or an objective
clinical assessment.1 Relapses are experienced by over
pseudo-attack and an exacerbation
80% of people diagnosed with MS.20 Without • Describe the features of a relapse
disease-modifying treatment, the mean annual
frequency of exacerbations in people with a relapsing
form of MS is between 0.4 and 1.1 per person.19

The McDonald Criteria state that there must be a


2.4.3 Features of an MS relapse
period of a minimum of 30 days between the onset These are as follows:
of the original symptoms and the development of • The appearance of a new clinical sign/symptom
new signs and symptoms for this to be considered a
• Or the clinical worsening of a previous
separate relapse.1
sign/symptom that had been stable for at least
the previous 30 days
• And which persisted for a minimum of 24 hours.
2.4.2 Pseudo-attack
Signs and symptoms can also appear to be an
exacerbation, and can be diverse.20 However, when the
person is assessed by an expert clinician, the episode
may be identified as a pseudo-attack.
A pseudo-attack can be defined as the presence
of neurological symptoms caused by a change in
core body temperature or infection.1 It is essential to
distinguish between an exacerbation and pseudo-
attack. A pseudo-attack is not an exacerbation and
tends to subside when the cause is addressed.21

Module 2 - Diagnosis 36
2.5 Quantitative Clinical
Measures
2.5.1 The Expanded Disability
Status Scale (EDSS) Learning Objectives
The EDSS22 is the most widely used assessment tool
After completing this section, the
for measuring impairment and disability in MS. Scores
in this 20-step scale range from 0.0 (normal status)
reader will be able to:
to 10.0 (death due to MS). The scale is not linear, • Outline the EDSS scores for
but ordinal, hence score increases reflect progressive
impairment and disability
accumulation of impairment and disability, and progress
of 1 point is not equivalent across the scale. Scores of • Understand the role of the MSFC
0.0 to 3.5 mainly rely on the functional systems, scores score and how it is derived
of 4.0 to 7.5 rely on ambulation, scores of 8.0 to 8.5 will
indicate upper arm function, and scores of 9.0 to 9.5 • List other scales used
indicate bulbar involvement. With scores higher than
22

3.5 primarily reflecting mobility, criticisms of the scale


include its insensitivity to sensory symptoms and to with each hand sequentially, to insert and then
major impairment such as blindness or dementia.23 remove 9 pegs into a pegboard).

Inter-rater and intra-person reliability, particularly at • Cognitive function (Paced Auditory Serial Addition
lower ends of the scale, have also been a cause for Test or PASAT which assesses calculation ability as
concern. In spite of these shortcomings the EDSS
24 well as speed and flexibility of auditory information
is considered to have sufficient sensitivity and clinical processing).
relevance23 to warrant its widespread use in MS
Although designed as a composite score and research
assessment. EDSS scoring is included in Appendix A.
tool, there is a capacity for individual components of the
MSFC to be applied in the clinical setting.

2.5.2 The Multiple Sclerosis


Functional Composite Score 2.5.3 Other scales
The MSFC is a scoring system commonly used in Other scales and scoring systems used in the diagnosis
MS clinical trials. It seeks to address some of the of MS include:
shortcomings of the EDSS by reducing reliance on
• Guy’s Neurological Disability Scale26
lower limb function and by incorporating measures of
cognitive and upper limb function. The composite score • Multiple Sclerosis Composite Score25
is arrived at by averaging the results of three separate • Multiple Sclerosis Impact Scale (MSIS-29)27
components: • Scripps Neurological Rating Scale28
• Leg function (timed ambulation over 25 feet). • Ambulation Index29
• Arm function (9-Hole Peg Test – the time taken, • Functional Independence Measure30

Module 2 - Diagnosis 37
2.6 Paediatrics

2.6.1 Early onset


multiple sclerosis Learning Objectives
MS is accepted to be largely a disease of young
adults aged between 20 to 40 years of age (see
After completing this section, the
Module 1. Overview of MS). However with increasing reader will be able to:
awareness of the disease and advancing diagnostic
• Discuss early onset multiple
technology this notion has been challenged; many
sclerosis
adults diagnosed with adult onset MS often report that
their first symptom episode was in childhood. Thus, the • Outline the differences between
literature refers to early onset MS (EOMS) as a distinct
adult onset and early onset
group of people with definite MS diagnosed during
multiple sclerosis
their childhood, that is, before 18 years of age.31-35

The incidence of EOMS is approximately 2 to 5%


• List presenting and ongoing
of people with MS experiencing their first clinical symptoms
symptoms before age 16;36-38 the age of onset is <1%
• Understand the diagnosis
below 10 years and <4% between 10 and 18 years of
age. The earliest onset has been reported as young as • Describe the therapeutic aims of
10 months, and the highest risk appears at 12 years of management
age, and affecting girls more than boys (ratio 3:1).39,40
• Understand the psychological
Children may be under diagnosed due to the following:
impact
• Acute disseminated encephalomyelitis is more
common than EOMS • Refer to additional resources
• A multitude of CNS diseases mimic MS
• Delay in diagnosis until adulthood.

2.6.2 Clinical subtypes


Similar to adult onset MS (AOMS)
1. Most common: Relapsing-remitting MS37,41
2. Moderately common:
Secondary-progressive MS
3. Relatively infrequent: Primary-progressive MS37
4. Rare: Benign MS

Module 2 - Diagnosis 38
2.6.3 Natural history 2.6.6 Symptoms of
Children often exhibit systemic symptoms, such as exacerbation or relapses
malaise, irritability, and/or low-grade fever, which are
• Seizures
similar to symptoms of encephalomyelitis or metabolic
encephalopathy. • Sensory and/or motor deficits
• Heat intolerance
In retrospective paediatric MS studies, a consistent
• Fatigue
finding is lower disability scores compared to adult
MS, taking into account disease duration. Median time • Changes in bladder and bowel pattern
to reach EDSS of 4.0 was approximately 20 years for
paediatric MS, and 10 years for adult MS.22 Although
the clinical course may be favourable initially, EOMS
people can be more disabled at an earlier age.37,38 2.6.7 Diagnosis
1. Typical clinical history and examination, CNS lesions
disseminated in time and place
• T wo separate episodes of symptoms
2.6.4 Presenting symptoms
•O
 ptic neuritis, sensory or autonomic disturbance
at onset • T ransverse myelitis
Frequent symptoms (most to least): • L hermitte phenomenon, Uhthoff ’s phenomenon
• Hemisensory disturbances – numbness, paraesthesia, • T riggers (exacerbation and increase in symptoms):
Lhermitte’s sign rise in body temperature, stress, infections
• Motor deficits – limb weakness, tremor 2. M RI findings in symptomatic and asymptomatic
• Optic neuritis – blurred vision, diplopia, decreased people
visual acuity •B
 right colour lesions on T2-weighted and perfusion
• Brainstem/cerebellar – vertigo, dysarthria, ataxia diffuse images

• Seizures • T 1 Gadolinium enhancing lesions

• Bladder dysfunction • T 1 “Black holes”

• Cognitive changes •B
 rain areas mostly affected: periventricular white
matter, adjacent to the lateral ventricles, corpus
callosum, subcortical white matter36
• Lesions can also occur in spinal cord and
2.6.5 Potential ongoing brainstem36
symptoms • Cortical atrophy may be present or seen over time
• Cautions: mimics of MS (eg post-infection or
•C
 ognitive deficits - decline in school performance
drugs)
• F atigue
3. Laboratory findings that support the diagnosis
•H
 eat intolerance • CSF oligoclonal bands
•H
 eadache • VEP testing
• T remor
• S pasticity
• S eizures

Module 2 - Diagnosis 39
2.6.8 Impact of diagnosis 2.6.10 Management
The following could be explored: considerations34,43
• L abel – a very disabling disease • Promptness of diagnosis and treatment
•G
 rowth and development – cognitive, physical • Parents required to make informed decisions
• P arents/family – education and support regarding treatment and care
•N
 ursing role – EOMS Clinic • Children may lack maturity to understand, decide and
accept treatment options
• Lack of clinical trials that provide evidence to support
the efficacy of disease-modifying therapies in the
2.6.9 Therapeutic aims paediatric cohort
• Growing CNS and immature immune system
1. Shorten the duration of a relapse: – affects dosing of disease-modifying therapies
• Rest – steroids may cause growth retardation with
• Steroids prolonged use42
• Intravenous gammaglobulin • Care approaches need to change at different stages
2. Modify disease course (modulate the inflammatory of growth and development
process, thereby reduce axonal injury): • School issues and behaviour problems44
• Interferons (Betaferon, Rebif, Avonex) • Potential cognitive impact during this period of
• Glatiramer acetate (Copaxone) ongoing myelinogenesis (unknown consequences)44,45
• Immunosuppressive (methotrexate, • Include paediatric health professionals in providing
cyclophosphamide, mitoxantrone) comprehensive multidisciplinary care to meet inherent
• Humanised monoclonal antibody (Tysabri) needs
Efficacy and tolerability data for the immunotherapies is
extremely limited in the paediatric age group, and are
not indicated for use in children with MS. There is some 2.6.11 Psychological impact on
reported experience in literature using these therapies
in children.42 the child, adolescent
3. Considerations and parents
• Dosage, physiological derangement, side effect
management Challenges exist for both children and parents
• Initiating therapy related to dealing with the unpredictable nature of
• Education MS, behavioural changes and the potential for major
• Addressing adherence disability.44 Shock and dismay are common feelings that
• Support for parents and children parents and caregivers experience when having to face
4. Management of secondary effects of the disease the diagnosis of MS in a child or adolescent.41
• Symptom management The most common age group to be affected by
• Treat infections paediatric MS is adolescence. Sensitivity is essential
• Nutrition when dealing with teenagers as they may be
particularly vulnerable psychologically. The paucity of
research available on the topic and its management can
make assisting with psychosocial issues more difficult.44

As with other chronic medical diseases, a sense of


isolation, dependence on long-term treatment and the
need for self-management may result in this group
being at a greater risk of behavioural problems.

Module 2 - Diagnosis 40
In MS, severe fatigue, motor impairments, visual loss
2.6.12 Resources for persons
and bladder dysfunction can be particularly problematic
symptoms. MS-specific factors affecting behavioural with MS and families
problems in MS may be physical disabilities, living with
The National MS Society (US) and the MS Society
a rare disease and its unpredictable nature. Negative
of Canada have established a support network called
effects on a child’s self-perception may result from all
Young Persons with MS: A Network for Families with a
these factors.44
Child or Teen with MS. It targets both children 18 years
Social functioning and school impact:44
and younger with MS and parents of a child or teen
– Frequent sick days with MS. An online handbook has been developed,
– Unpredictable symptoms resulting in written by Paediatric Specialists. It is called Kids Get MS
misinterpretation (teachers need to adapt to Too: a Guide for Parents Whose Child or Teen has MS
changeable symptoms) and is available to download from the Canadian MS
– Gait impairments may interfere with getting to Society’s website:
class www.mssociety.ca/en/pdf/PediatricMSQAEN.pdf
– Fatigue may limit a child’s ability to attend school
– Visual disturbances may interfere with note taking Mighty Special Kids is an activity book for kids with MS
and exams aged from 5-12 years old. It aims to help families talk
– Uncharacteristic behaviour in the classroom about MS. An interactive version of the book can be
– Questioning of future career goals accessed through the National MS Society website or
Effects on the individual:44 directly at:
– Behaviour changes including risk-taking http://main.nationalmssociety.org/MSkids/index.html
behaviours that raises health and safety concerns
Talkin’ Teens is a chat room available for teens with
– Depression, social withdrawal
MS. Open to ages 13-18. Details are available on the
Family:44
National MS Society website
– Parents frequently report feeling lost
www.nationalmssociety.org/ under the ‘Teen InsideMS’
– Rarely meet other parents in similar situation
link. Teens must register with MS World at
– Mourn the loss of a healthy child
www.msworld.org/
Coping with chronic diseases are better dealt
Teen magazines can be downloaded from this site.
with when good communication, a supportive and
expressive family atmosphere, and external support Other Paediatric MS resources for children, teens and
from friends and health care providers is achieved. parents are provided at:
Health care: 44 National MS Society website
– May refuse treatment regimen adherence, www.nationalmssociety.org/
particularly when not experiencing relapses and Canadian MS Society www.mssociety.ca/ or
seem healthy
Interventions may include:44 Multiple Sclerosis Resource Centre www.msrc.co.uk

– Medication management and empowerment in


decision-making
– Counselling with a chronic illness focus Acknowledgment
– Support network In addition to the cited references, Dr Andrew Kornberg,
A multidisciplinary approach to assessment and Consultant Neurologist, Department of Neurology, Royal
Children Hospital, Melbourne is acknowledged for the clinical
interventions for any problems is recommended, information initially provided for the Paediatrics section.
addressing the child’s functioning at home, school and
among peers. Consequences for the overall family unit
are also important to address.

Module 2 - Diagnosis 41
2.7 Newly Diagnosed MS

Introduction
Nurses play a critical role in the education and support Learning Objectives
of newly diagnosed people with MS and their families.
This role demands that nurses have a comprehensive After completing this section, the
understanding of the disease process and the effects of reader will be able to:
MS on overall personal health and life status.
• Implement a care plan for people
A diagnosis of MS evokes an array of emotional
newly diagnosed with MS
responses that can range from shock, grief, anger, and
fear, to profound relief in the knowledge that the reason
for the symptoms has finally been discovered. Therefore,
nurses should develop care plans that effectively ease
the person’s movement through this emotional roller
coaster and assist in the development of an effective
nurse-person relationship. Nurses should also be able
to communicate this knowledge effectively to people
and/or their families.46

In this section, a care plan for people newly diagnosed


with MS is presented (see Table 2-3). Perceptions
formed at this time can have lasting effects on coping
and on relationships with members of the health
care team.46

Module 2 - Diagnosis 42
Table 2-3. Care plan for people newly diagnosed with MS.
Nursing diagnosis Intervention Rationale Desired patient
outcomes
Anxiety relating to:
Knowledge deficit of Review patient’s Basic knowledge may Understands disease
disease process present knowledge and already be present process
understanding of MS

Expand patient’s present Patient may have


knowledge base misconceptions about the
disease
Uncertainty about Provide positive Positive information allows Confident about the future
future physical and social information the patient to remain
capabilities hopeful throughout the
Expand patient’s present disease process
knowledge base
Worries regarding Provide relevant Given all relevant Understands issues
parenting information information, parenting related to MS and
about pregnancy and should be an individual parenting
parenting issues in decision
relation to MS
Inability to recognise the Provide information about Knowledge of symptoms Distinguishes between
symptoms of an attack what constitutes a true of true and pseudo attacks the symptoms of a true
attack reduces anxiety MS attack and those of a
pseudo attack
Nonadherence relating to:
Denial of diagnosis Review diagnostic criteria Patient may be confused Accepts diagnosis
and classification about the certainty of the
diagnosis
Powerless relating to:
Unpredictable nature of Review patient’s Patient may have Possesses realistic
disease comprehension of his/her preconceived ideas and expectations of disease
prognosis misconceptions about future process and future
abilities abilities
Grief relating to:
Loss of former self Reinforce that grieving Grieving allows the patient Accepts disease
is acceptable to move forward
Confusion relating to:
Difficulty in distinguishing Educate the patient on Wellness and an Recognises that other
which symptoms are related the disease process and understanding of the conditions may be
to MS and which are on other conditions that disease process promote a responsible for symptoms
related to other conditions may coexist with MS healthy outlook on life

Promote patient wellness


Information-seeking relating to:
Need to confirm present Direct patient to Empowerment is gained Possesses correct
knowledge appropriate through knowledge knowledge
information resources of disease
Need to make informed (eg library, literature
decisions about available packages supplied by
treatment options, clinics, MS Society of
resources, and supports Australia, reputable
websites; see Module 6.3
Need for control for a list of such websites)
*The plan for educational sessions for people newly diagnosed with MS should include discussions on how the diagnosis is
made and the definitiveness of diagnosis. The patient should be encouraged to guide the course of the session. In order to
promote patient understanding, the function and purpose of paraclinical tests should be reinforced.

Module 2 - Diagnosis 43
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Module 2 - Diagnosis 45

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