1 Recommendations

The following guidance is based on the best available evidence. The full guideline gives details of the methods and the evidence used to develop the guidance.

The wording used in the recommendations in this guideline (for example, words such as 'offer' and 'consider') denotes the certainty with which the recommendation is made (the strength of the recommendation). See About this guideline for details.

1.1 Diagnosing MS

1.1.1 Be aware that clinical presentations in multiple sclerosis (MS) include:

  • loss or reduction of vision in 1 eye with painful eye movements

  • double vision

  • ascending sensory disturbance and/or weakness

  • problems with balance, unsteadiness or clumsiness

  • altered sensation travelling down the back and sometimes into the limbs when bending the neck forwards (Lhermitte's symptom).

1.1.2 Be aware that usually people with MS present with neurological symptoms or signs as described in recommendation 1.1.1, and:

  • are often aged under 50 and

  • may have a history of previous neurological symptoms and

  • have symptoms that have evolved over more than 24 hours and

  • have symptoms that may persist over several days or weeks and then improve.

1.1.3 Do not routinely suspect MS if a person's main symptoms are fatigue, depression or dizziness unless they have a history or evidence of focal neurological symptoms or signs.

1.1.4 Before referring a person suspected of having MS to a neurologist, exclude alternative diagnoses by performing blood tests including:

  • full blood count

  • inflammatory markers for example erythrocyte sedimentation rate, C‑reactive protein

  • liver function tests

  • renal function tests

  • calcium

  • glucose

  • thyroid function tests

  • vitamin B12

  • HIV serology.

1.1.5 Do not diagnose MS on the basis of MRI findings alone.

1.1.6 Refer people suspected of having MS to a consultant neurologist. Speak to the consultant neurologist if you think a person needs to be seen urgently.

1.1.7 Only a consultant neurologist should make the diagnosis of MS on the basis of established up‑to‑date criteria, such as the revised 2010 McDonald criteria[2], after:

  • assessing that episodes are consistent with an inflammatory process

  • excluding alternative diagnoses

  • establishing that lesions have developed at different times and are in different anatomical locations for a diagnosis of relapsing–remitting MS

  • establishing progressive neurological deterioration over 1 year or more for a diagnosis of primary progressive MS.

1.1.8 If a person is suspected[2] of having MS but does not fulfil the diagnostic criteria, plan a review. Discuss the timing of the review with the person and ensure they know who to contact for advice if they develop further neurological symptoms or if current symptoms worsen.

1.1.9 Offer people suspected of having MS, information about support groups and national charities.

Optic neuritis and neuromyelitis optica

1.1.10 If a person has an episode of isolated optic neuritis, confirmed by an ophthalmologist, refer them to a consultant neurologist for further assessment.

1.1.11 Diagnosis of neuromyelitis optica should be made by an appropriate specialist based on established up‑to‑date criteria.

1.2 Providing information and support

1.2.1 NICE has produced guidance on the components of good patient experience in adult NHS services. This includes recommendations on communication, information and coordination of care. Follow the recommendations in Patient experience in adult NHS services (NICE clinical guideline 138).

Information at the time of diagnosis

1.2.2 The consultant neurologist should ensure that people with MS and, with their agreement their family members or carers, are offered oral and written information at the time of diagnosis. This should include, but not be limited to, information about:

  • what MS is

  • treatments, including disease‑modifying therapies

  • symptom management

  • how support groups, local services, social services and national charities are organised and how to get in touch with them

  • legal requirements such as notifying the Driver and Vehicle Licensing Agency (DVLA) and legal rights including social care, employment rights and benefits.

1.2.3 Discuss with the person with MS and their family members or carers whether they have social care needs and if so refer them to social services for assessment. Ensure the needs of children of people with MS are addressed.

1.2.4 Offer the person with MS a face‑to‑face follow‑up appointment with a healthcare professional with expertise in MS to take place within 6 weeks of diagnosis.

Ongoing information and support

1.2.5 Review information, support and social care needs regularly. Continue to offer information and support to people with MS or their family members or carers even if this has been declined previously.

1.2.6 Ensure people with MS and their family members or carers have a management plan that includes who to contact if their symptoms change significantly.

1.2.7 Explain to people with MS that the possible causes of symptom changes include:

  • another illness such as an infection

  • further relapse

  • change of disease status (for example progression).

1.2.8 Talk to people with MS and their family members or carers about the possibility that the condition might lead to cognitive problems.

1.2.9 When appropriate, explain to the person with MS (and their family members or carers if the person wishes) about advance care planning and power of attorney.

1.3 Coordination of care

1.3.1 Care for people with MS using a coordinated multidisciplinary approach. Involve professionals who can best meet the needs of the person with MS and who have expertise in managing MS including:

  • consultant neurologists

  • MS nurses

  • physiotherapists and occupational therapists

  • speech and language therapists, psychologists, dietitians, social care and continence specialists

  • GPs.

1.3.2 Offer the person with MS an appropriate single point of contact to coordinate care and help them access services.

1.4 Modifiable risk factors for relapse or progression of MS

Exercise

1.4.1 Encourage people with MS to exercise. Advise them that regular exercise may have beneficial effects on their MS and does not have any harmful effects on their MS.

Vaccinations

1.4.2 Be aware that live vaccinations may be contraindicated in people with MS who are being treated with disease‑modifying therapies.

1.4.3 Discuss with the person with MS:

  • the possible benefits of flu vaccination and

  • the possible risk of relapse after flu vaccination if they have relapsing–remitting MS.

1.4.4 Offer flu vaccinations to people with MS in accordance with national guidelines, which recommend an individualised approach according to the person's needs[3].

Pregnancy

1.4.5 Explain to women of childbearing age with MS that:

  • relapse rates may reduce during pregnancy and may increase 3–6 months after childbirth before returning to pre‑pregnancy rates

  • pregnancy does not increase the risk of progression of disease.

1.4.6 If a person with MS is thinking about pregnancy, give them the opportunity to talk with a healthcare professional with knowledge of MS about:

  • fertility

  • the risk of the child developing MS

  • use of vitamin D before conception and during pregnancy

  • medication use in pregnancy

  • pain relief during delivery (including epidurals)

  • care of the child

  • breastfeeding.

Smoking

1.4.7 Advise people with MS not to smoke and explain that it may increase the progression of disability. (See Smoking cessation services NICE public health guideline 10.)

1.5 MS symptom management and rehabilitation

The guideline does not make recommendations for all symptoms that occur in people with MS. Some symptoms are addressed in other NICE guidelines and these are referenced where appropriate.

1.5.1 Determine how often the person with MS will need to be seen based on:

  • their needs, and those of their family and carers and

  • the frequency of visits needed for different types of treatment (such as review of disease‑modifying therapies, rehabilitation and symptom management).

Fatigue

1.5.2 Assess and offer treatment to people with MS who have fatigue for anxiety, depression, difficulty in sleeping, and any potential medical problems such as anaemia or thyroid disease.

1.5.3 Explain that MS‑related fatigue may be precipitated by heat, overexertion and stress or may be related to the time of day.

1.5.4 Offer amantadine[4] to treat fatigue in people with MS.

1.5.5 Consider mindfulness‑based training, cognitive behavioural therapy or fatigue management for treating MS‑related fatigue.

1.5.6 Advise people that aerobic, balance and stretching exercises including yoga may be helpful in treating MS‑related fatigue.

1.5.7 Do not use vitamin B12 injections to treat fatigue in people with MS.

1.5.8 Consider a comprehensive programme of aerobic and moderate progressive resistance activity combined with cognitive behavioural techniques for fatigue in people with MS with moderately impaired mobility (an EDSS[5] score of greater than or equal to 4).

Mobility

1.5.9 Ensure people with MS and mobility problems have access to an assessment to establish individual goals and discuss ways in which to achieve them. This would usually involve rehabilitation specialists and physiotherapists with expertise in MS.

1.5.10 Do not use fampridine to treat lack of mobility in people with MS because it is not a cost effective treatment[6].

Mobility or fatigue

1.5.11 Consider supervised exercise programmes involving moderate progressive resistance training and aerobic exercise to treat people with MS who have mobility problems and/or fatigue.

Mobility and/or fatigue with balance problems

1.5.12 Consider vestibular rehabilitation for people with MS who have fatigue or mobility problems associated with limited standing balance.

Treatment programmes for mobility and/or fatigue

1.5.13 Encourage people with MS to keep exercising after treatment programmes end for longer term benefits (see Behaviour change: individual approaches NICE public health guideline 49).

1.5.14 Help the person with MS continue to exercise, for example by referring them to exercise referral schemes.

1.5.15 If more than one of the interventions recommended for mobility or fatigue are suitable, offer treatment based on which the person prefers and whether they can continue the activity after the treatment programme ends.

Spasticity

1.5.16 In people with MS assess and offer treatment for factors that may aggravate spasticity such as constipation, urinary tract or other infections, inappropriately fitted mobility aids, pressure ulcers, posture and pain.

1.5.17 Encourage people with MS to manage their own spasticity symptoms by explaining how doses of drugs can be adjusted within agreed limits.

1.5.18 Ensure that the person with MS:

  • has tried the drug at an optimal dose, or the maximum dose they can tolerate

  • stops the drug if there is no benefit at the maximum tolerated dose

  • has their drug treatment reviewed at least annually once the optimal dose has been reached.

1.5.19 Consider baclofen or gabapentin[7] as a first‑line drug to treat spasticity in MS depending on contraindications and the person's comorbidities and preferences. If the person with MS cannot tolerate one of these drugs consider switching to the other.

1.5.20 Consider a combination of baclofen and gabapentin[7],[8] for people with MS if:

  • individual drugs do not provide adequate relief or

  • side effects from individual drugs prevent the dose being increased.

1.5.21 Consider tizanidine or dantrolene as a second‑line option to treat spasticity in people with MS.

1.5.22 Consider benzodiazepines as a third‑line option to treat spasticity in MS and be aware of their potential benefit in treating nocturnal spasms.

1.5.23 Do not offer Sativex to treat spasticity in people with MS because it is not a cost effective treatment[9].

1.5.24 If spasticity cannot be managed with any of the above pharmacological treatments, refer the person to specialist spasticity services.

Oscillopsia[10]

1.5.25 Consider gabapentin[7] as a first‑line drug to treat oscillopsia in people with MS.

1.5.26 Consider memantine[11] as the second‑line treatment for oscillopsia in people with MS.

1.5.27 Refer the person with MS for specialist advice if there is no improvement of oscillopsia after treatment with gabapentin and memantine or side effects prevent continued use.

Emotional lability[12]

1.5.28 Consider amitriptyline[13] to treat emotional lability in people with MS.

Pain

1.5.29 Treat neuropathic pain in people with MS according to Neuropathic pain – pharmacological management (NICE clinical guideline 173) and refer to pain services if appropriate.

1.5.30 Be aware that musculoskeletal pain is common in people with MS and is usually secondary to problems with mobility and posture. Assess musculoskeletal pain, offer treatment to the person and refer them as appropriate.

Cognition including memory

1.5.31 Be aware that the symptoms of MS can include cognitive problems, including memory problems that the person may not immediately recognise or associate with their MS.

1.5.32 Be aware that anxiety, depression, difficulty in sleeping and fatigue can impact on cognitive problems. If a person with MS experiences these symptoms and has problems with memory and cognition, offer them an assessment and treatment.

1.5.33 Consider referring people with MS and persisting memory or cognitive problems to both an occupational therapist and a neuropsychologist to assess and manage these symptoms.

1.6 Comprehensive review

1.6.1 Ensure all people with MS have a comprehensive review of all aspects of their care at least once a year.

1.6.2 Ensure the comprehensive review is carried out by healthcare professionals with expertise in MS and its complications. Involve different healthcare professionals with expertise in specific areas of the review if needed.

1.6.3 Tailor the comprehensive review to the needs of the person with MS assessing:

  • MS symptoms:

  • MS disease course:

    • relapses in last year.

  • General health:

    • weight

    • smoking, alcohol and recreational drugs

    • exercise

    • access to routine health screening and contraception

    • care of other chronic conditions.

  • Social activity and participation:

    • family and social circumstances

    • driving and access to transport

    • employment

    • access to daily activities and leisure.

  • Care and carers:

    • personal care needs

    • social care needs

    • access to adaptations and equipment at home.

1.6.4 Refer any issues identified during the comprehensive review of the person with MS to members of the MS multidisciplinary team and other appropriate teams so that they can be managed.

1.6.5 Ensure people with MS are offered a medication review in line with Medicines adherence (NICE clinical guideline 76).

1.6.6 Ensure people with MS have their bone health regularly assessed and reviewed in line with Osteoporosis: assessing the risk of fragility fracture (NICE clinical guideline 146).

1.6.7 Ensure people with MS and severely reduced mobility are regularly assessed and reviewed for risk of contractures.[14]

1.6.8 Check people with MS and severely reduced mobility at every contact for areas at risk of pressure ulcers (see Pressure ulcers NICE clinical guideline 179).

1.6.9 Discuss the care provided by carers and care workers as part of the person's care plan. Ensure carers know about their right to a local authority carer's assessment and how to apply for one.

1.6.10 Refer people with MS to palliative care services for symptom control and for end of life care when appropriate.

1.7 Relapse and exacerbation

Treating acute relapse of MS with steroids

1.7.1 Develop local guidance and pathways for timely treatment of relapses of MS. Ensure follow‑up is included in the guidance and pathway.

1.7.2 Non‑specialists should discuss a person's diagnosis of relapse and whether to offer steroids with a healthcare professional with expertise in MS because not all relapses need treating with steroids.

Recognising a relapse

1.7.3 Diagnose a relapse of MS if the person:

  • develops new symptoms or

  • has worsening of existing symptoms

    and these last for more than 24 hours in the absence of infection or any other cause after a stable period of at least 1 month.

1.7.4 Before diagnosing a relapse of MS:

  • rule out infection – particularly urinary tract and respiratory infections and

  • discriminate between the relapse and fluctuations in disease or progression.

1.7.5 Assess and offer treatment for relapses of MS, that affect the person's ability to perform their usual tasks, as early as possible and within 14 days of onset of symptoms.

1.7.6 Do not routinely diagnose a relapse of MS if symptoms are present for more than 3 months.

Treating a relapse

1.7.7 Offer treatment for relapse of MS with oral methylprednisolone 0.5 g daily for 5 days.

1.7.8 Consider intravenous methylprednisolone 1 g daily for 3–5 days as an alternative for people with MS:

  • in whom oral steroids have failed or not been tolerated or

  • who need admitting to hospital for a severe relapse or monitoring of medical or psychological conditions such as diabetes or depression.

1.7.9 Do not prescribe steroids at lower doses than methylprednisolone 0.5 g daily for 5 days to treat an acute relapse of MS.

1.7.10 Do not give people with MS a supply of steroids to self‑administer at home for future relapses.

Information about treating a relapse with steroids

1.7.11 Discuss the benefits and risks of steroids with the person with MS, taking into account the effect of the relapse on the person's ability to perform their usual tasks and their wellbeing.

1.7.12 Explain the potential complications of high‑dose steroids, for example temporary effects on mental health (such as depression, confusion and agitation) and worsening of blood glucose control in people with diabetes.

1.7.13 Give the person with MS and their family members or carers (as appropriate) information that they can take away about side effects of high‑dose steroids in a format that is appropriate for them.

1.7.14 Ensure that the MS multidisciplinary team is told that the person is having a relapse, because relapse frequency may influence which disease‑modifying therapies are chosen and whether they need to be changed.

Medical, therapy and social care needs at time of relapse or exacerbation

1.7.15 Identify whether the person having a relapse of MS or their family members or carers have social care needs and if so refer them to social services for assessment.

1.7.16 Offer inpatient treatment to the person having a relapse of MS if their relapse is severe or if it is difficult to meet their medical and social care needs at home.

1.7.17 Explain that a relapse of MS may have short‑term effects on cognitive function.

1.7.18 Identify whether the person with MS having a relapse or exacerbation needs additional symptom management or rehabilitation.

1.8 Other treatments

Vitamin D

1.8.1 Do not offer vitamin D solely for the purpose of treating MS.

Omega fatty acids compounds

1.8.2 Do not offer omega‑3 or omega‑6 fatty acid compounds to treat MS. Explain that there is no evidence that they affect relapse frequency or progression of MS.



[2] Polman CH, Reingold SC, Banwell B et al. (2011) Diagnostic criteria for multiple sclerosis: 2010 revisions to the McDonald criteria. Annals of Neurology 69: 292–302.

[3] 'Chronic neurological disease: conditions in which respiratory function may be compromised, due to neurological disease (e.g. polio syndrome sufferers). Clinicians should consider on an individual basis the clinical needs of patients including individuals with cerebral palsy, multiple sclerosis and related or other similar conditions; or hereditary and degenerative disease of the nervous system of muscles; or severe disability.' (Department of Health 2013)

[4] At the time of publication (October 2014), amantadine did not have a UK marketing authorisation for this indication. The prescriber should follow relevant professional guidance, taking full responsibility for the decision. Informed consent should be obtained and documented. See the General Medical Council's Good practice in prescribing medicines – guidance for doctors for further information.

[5] Expanded Disability Status Scale.

[6] This recommendation does not apply to people who have already started treatment with fampridine in the NHS who should be able to continue treatment until they and their NHS clinician think it appropriate to stop.

[7] At the time of publication (October 2014), gabapentin did not have a UK marketing authorisation for this indication. The prescriber should follow relevant professional guidance, taking full responsibility for the decision. Informed consent should be obtained and documented. See the General Medical Council's Good practice in prescribing medicines – guidance for doctors for further information.

[8] Use caution when using gabapentin and baclofen in combination. For more information on cautions for these drugs see the summary of product characteristics for gabapentin and baclofen and the British National Formulary.

[9] This recommendation does not apply to people who have already started treatment with Sativex in the NHS who should be able to continue treatment until they and their NHS clinician think it appropriate to stop.

[10] The subjective sensation of horizontal and/or vertical movement of the visual field that is unexplained by movement of the observer or environment.

[11] At the time of publication (October 2014), memantine did not have a UK marketing authorisation for this indication. The prescriber should follow relevant professional guidance, taking full responsibility for the decision. Informed consent should be obtained and documented. See the General Medical Council's Good practice in prescribing medicines – guidance for doctors for further information.

[12] Involuntary laughing and crying related to a frontal lobe lesion.

[13] At the time of publication (October 2014), amitriptyline did not have a UK marketing authorisation for this indication. The prescriber should follow relevant professional guidance, taking full responsibility for the decision. Informed consent should be obtained and documented. See the General Medical Council's Good practice in prescribing medicines – guidance for doctors for further information.

[14] A contracture is a shortening in the soft tissues (that is, tendons, muscles or ligaments) around a joint that limits the passive (and active) range of movement at that joint.

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