Recommendations

People have the right to be involved in discussions and make informed decisions about their care, as described in NICE's information on making decisions about your care.

Making decisions using NICE guidelines explains how we use words to show the strength (or certainty) of our recommendations, and has information about prescribing medicines (including off-label use), professional guidelines, standards and laws (including on consent and mental capacity), and safeguarding.

1.1 Diagnosing multiple sclerosis

Recognising multiple sclerosis

See also NICE's guideline on suspected neurological conditions: recognition and referral for advice for non-specialists on initial assessment of symptoms and signs that might indicate a neurological condition.

1.1.1

Be aware that people with multiple sclerosis (MS) may present with a wide range of symptoms affecting different parts of the body. The most common are:

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

  • double vision

  • ascending sensory disturbance and/or weakness

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

  • progressive difficulties with balance and gait. [2022]

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 and

  • do not have fever or infection. [2022]

1.1.3

Do not routinely suspect MS if a person's main symptoms are fatigue, depression, dizziness or vague sensory phenomena, unless they have a history or evidence of focal neurological symptoms or signs. [2022]

Initial assessment

1.1.4

Before referring a person suspected of having MS to a neurologist, confirm that this is a neurological episode by taking a history, undertaking a physical examination and excluding alternative, more common diagnoses. [2022]

Referral and diagnosis

1.1.5

Refer people suspected of having MS for diagnosis by a consultant neurologist or a specialist under their supervision. Contact the consultant neurologist directly if you think a person needs to be seen urgently. [2022]

1.1.6

Diagnose MS using a combination of history, examination, MRI and laboratory findings, and by following the 2017 revised McDonald criteria. This should include:

  • assessing that symptoms are consistent with an inflammatory demyelinating process; for example, headache is not suggestive of MS

  • excluding alternative diagnoses (targeted laboratory tests may be indicated if the history, examination or MRI findings are atypical)

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

  • looking for cerebrospinal fluid-specific oligoclonal bands if there is no clinical or radiological evidence of lesions developing at different times

  • establishing progressive neurological deterioration over 1 year or more for a diagnosis of primary progressive MS. [2022]

1.1.7

If the McDonald criteria are not met but MS is suspected or the person has confirmed clinically isolated syndrome (see the 2017 McDonald criteria for a definition of clinically isolated syndrome):

  • Plan a review to reassess the possibility of MS. Discuss the timing of this and future reviews with the person (for example, annually).

  • Provide information and ensure that the person knows who to contact for advice if they develop further neurological symptoms or if current symptoms worsen. [2022]

1.1.8

Do not diagnose MS on the basis of MRI findings alone. [2022]

For a short explanation of why the committee made these recommendations and how they might affect practice, see the rationale and impact section on diagnosing multiple sclerosis.

Full details of the committee's discussion are in the committee discussion for diagnostic criteria.

Optic neuritis and neuromyelitis optica spectrum disorder

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. [2014]

1.1.11

Diagnosis of neuromyelitis optica spectrum disorder should be made by an appropriate specialist based on established up‑to‑date criteria. [2014]

1.2 Providing information and support

For advice on communication and information follow the recommendations in NICE's guideline on patient experience in adult NHS services. For advice on shared decision making, follow the recommendations in NICE's guideline on shared decision making.

Information and support at the time of diagnosis

1.2.1

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

  • online resources

  • legal requirements such as notifying the Driver and Vehicle Licensing Agency (DVLA; see the DVLA webpage on multiple sclerosis and driving) and legal rights including social care, employment rights and benefits. [2014, amended 2022]

1.2.2

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. [2014]

1.2.3

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. [2014]

Ongoing information and support

1.2.4

Explain to people with MS that they should have a comprehensive review of their care at least once a year and what this should cover (see the section on comprehensive review). Advise them to ask their healthcare professional for a review if it has not taken place. [2022]

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. [2014]

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. [2014]

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). [2014]

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. [2014]

1.2.9

Provide ongoing information and support tailored to the person's changing needs or circumstances, for example, when planning to have children, if their MS is changing to a more progressive phase or as their MS becomes more advanced. [2022]

Information and support for people planning to have children or who are pregnant

1.2.11

Ask the person with MS soon after diagnosis and at regular intervals if they have any plans for starting or extending their family now or in the future, either through pregnancy or adoption. [2022]

1.2.12

Explain to people with MS that they should discuss with their healthcare professionals if they are planning to start or extend their family or become pregnant. In particular, ensure that people taking disease-modifying treatments understand that they should tell their healthcare professionals straight away if they are trying to become pregnant or if they become pregnant. [2022]

1.2.13

Explain to people with MS, and their partners if appropriate, that MS should not stop them from planning a family. Offer the opportunity to talk with a healthcare professional with knowledge of MS to answer any questions they have. For example, this may include discussing the following:

  • that fertility is not affected by MS

  • that pregnancy can be well managed in people with MS

  • the risk of the child developing MS

  • taking vitamin D and folic acid supplements before and during pregnancy (see NICE's guidelines on vitamin D and maternal and child nutrition)

  • possible changes to medicine use before and during pregnancy

  • that pregnancy does not increase the risk of disease progression

  • that relapses may decrease during pregnancy and may increase 3 to 6 months after childbirth before returning to pre-pregnancy rates

  • that birth options and pain relief choices available (including epidurals) should not be affected by MS

  • that breastfeeding is safe unless the person with MS is taking certain disease-modifying treatments

  • support that may be available with caring for and supporting children. [2022]

1.2.14

Discuss caring for a child and the possible impact of MS symptoms, such as fatigue, and how these could be managed. [2022]

Information and support for people as MS becomes more advanced, including those approaching the end of their life

1.2.15

Give people with MS that is becoming more advanced and their family members or carers information and support covering:

  • social isolation and feelings of depression

  • mobility aids and home adaptations

  • other support available, such as legal rights including social care, employment rights and benefits, and the right to a carer's assessment (see recommendation 1.2.6). [2022]

1.2.16

Explain to people with advanced MS and their family members or carers about the services available (for example, occupational therapy, palliative care and social services) and give them support to access them if needed. [2022]

For a short explanation of why the committee made the 2022 recommendations and how they might affect practice, see the rationale and impact section on providing information and support.

Full details of the evidence and the committee's discussion are in evidence review A: information and support for patients, their families and carers.

1.3 Coordination of care

For general advice on continuity of care and relationships follow the recommendations in NICE's guideline on patient experience in adult NHS services.

1.3.1

Offer the person with MS an appropriate single point of contact with knowledge of MS services to coordinate care and help them access services. [2022]

1.3.2

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:

  • MS nurses

  • consultant neurologists

  • physiotherapists with expertise in MS and occupational therapists

  • speech and language therapists, psychologists, dietitians, social care, continence specialists and specialist neuropharmacists or specialist MS pharmacists

  • consultants in rehabilitation medicine

  • primary healthcare team. [2014, amended 2022]

For a short explanation of why the committee made the 2022 recommendation and how it might affect practice, see the rationale and impact section on coordination of care.

Full details of the evidence and the committee's discussion are in evidence review B: coordination of care.

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. [2014]

Smoking

Vaccinations

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 relevant.

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). [2014]

1.5.2

When prescribing medicines for symptom management in people with MS, ensure that local arrangements for prescribing, supply and treatment review follow NICE's guideline on medicines optimisation. [2022]

Fatigue

Assessment and non-pharmacological management of fatigue
1.5.3

Ask people with MS if they are experiencing fatigue, sudden tiredness or a change in their energy levels affecting their daily living. [2022]

1.5.4

Do not assume that the person's fatigue is always caused by MS. Assess for other causes and manage these or refer the person for management if indicated. Other causes of fatigue may include:

1.5.5

Explain that MS‑related fatigue may be brought on by heat or biological, physical and emotional stress. [2022]

1.5.6

Offer people with MS and fatigue a personalised discussion about how they can be supported to self-manage their fatigue. This could include:

  • identifying goals and priorities

  • advice on conserving their energy

  • reviewing lifestyle factors such as diet and exercise

  • using stress management and wellbeing approaches such as mindfulness and cognitive behavioural techniques to help with day-to-day activities. [2022]

1.5.7

Advise people that aerobic, resistive and balance exercises, including yoga and pilates, may be helpful in treating MS‑related fatigue. [2022]

1.5.8

Explain to people that there is no evidence that a specific diet will improve fatigue in people with MS, but that a healthy diet will benefit their general health. [2022]

1.5.9

For people with MS with moderately impaired mobility (an EDSS [Expanded Disability Status Scale] score of greater than or equal to 4), consider a combination of:

  • a programme of supervised aerobic and moderate progressive resistance activity and

  • cognitive behavioural techniques. [2022]

1.5.10

Do not use vitamin B12 injections to treat fatigue in people with MS. [2014]

1.5.11

Do not offer hyperbaric oxygen to treat fatigue in people with MS. [2022]

See also the section on non-pharmacological management of mobility problems and fatigue.

For a short explanation of why the committee made the 2022 recommendations and how they might affect practice, see the rationale and impact section on assessment and non-pharmacological management of fatigue.

Full details of the evidence and the committee's discussion are in evidence review C: non-pharmacological management of fatigue.

Pharmacological management of fatigue
1.5.12

Discuss with the person with MS whether a medicine to treat fatigue might be an option for them. Explain that there are potential risks, benefits and safety concerns for the possible treatment options. [2022]

1.5.13

If a person with MS wishes to try a medicine for fatigue, refer them to a specialist to fully discuss the treatment options. [2022]

1.5.14

Use shared decision making to decide whether to try a medicine for fatigue and which would be most suitable. Taking into account the needs, priorities and preferences of the person with MS, and the risks and benefits of each treatment, consider any of the following:

1.5.15

Regularly review treatment to monitor effectiveness, safety and acceptability, adjust the dose, and decide whether to continue or stop the medicine:

For a short explanation of why the committee made these recommendations and how they might affect practice, see the rationale and impact section on pharmacological management of fatigue.

Full details of the evidence and the committee's discussion are in evidence review D: pharmacological management of fatigue.

Mobility problems

See also recommendation 1.4.1 for advice on encouraging exercise in people with MS.

For guidance on functional electrical stimulation for drop foot, see the NICE interventional procedures guidance on functional electrical stimulation for drop foot of central neurological origin.

1.5.17

Ensure people with MS and mobility problems have access to an assessment to establish individual goals and discuss ways to achieve them. This would usually involve rehabilitation specialists and physiotherapists with expertise in MS. [2014]

Pharmacological management of mobility problems
1.5.18

Do not offer fampridine to treat mobility problems in people with MS. Fampridine is a clinically effective treatment for some people, but it is not cost effective at the current list price. [2022]

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.

For a short explanation of why the committee made this recommendation and how it might affect practice, see the rationale and impact section on pharmacological management of mobility problems.

Full details of the evidence and the committee's discussion are in evidence review E: pharmacological management of mobility.

Non-pharmacological management of mobility problems and fatigue
1.5.19

Consider vestibular rehabilitation for people with MS who have fatigue or mobility problems associated with limited standing balance. [2014]

1.5.20

Consider supervised exercise programmes involving moderate progressive resistance training and aerobic exercise to treat people with MS who have mobility problems or fatigue. [2014]

1.5.21

Help the person with MS continue to exercise, for example, by referring them to a physiotherapist with expertise in MS or to exercise referral schemes. [2014, amended 2022]

1.5.22

If more than 1 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. [2014]

Spasticity

1.5.24

Suspect spasticity when a person with MS presents with any of the following:

  • involuntary muscle movements (spasms)

  • muscle stiffness

  • pain and restriction with certain movements or positions causing difficulty in performing various activities

  • a change in their mobility or upper limb function. [2022]

1.5.25

Assess people with MS and suspected spasticity for factors that might worsen spasticity, for example, pressure ulcers, bladder and bowel dysfunction and infections, poor posture or positioning, and pain. Provide support and information to help people with MS, and their families and carers if appropriate, to prevent and manage these factors. [2022]

1.5.26

Discuss with the person the balance between the benefits and harms of treating spasticity. In particular, explain that some people use their spasticity to maintain their posture and ability to stand, walk or transfer, and that treatment with muscle relaxants may adversely affect this. [2022]

1.5.27

Consider oral baclofen as a first-line drug treatment to treat spasticity in people with MS who have specific treatment goals such as improving mobility or easing pain and discomfort. Take into account any contraindications, comorbidities and the person's preferences. [2022]

1.5.28

If oral baclofen is not tolerated or does not provide adequate relief, consider gabapentin as a second-line option to treat spasticity in people with MS. For guidance on safe prescribing of gabapentin and managing withdrawal, see NICE's guideline on medicines associated with dependence or withdrawal symptoms. [2022]

In June 2022, this was an off-label use of gabapentin. See NICE's information on prescribing medicines. See also the 2019 MHRA drug safety update on pregabalin, gabapentin and risk of abuse and dependence.

1.5.29

When using oral baclofen or gabapentin to treat spasticity in people with MS, explain to the person that they should:

  • increase the dose gradually in at least 2‑week increments to optimise symptom improvement or until they reach the maximum dose they can tolerate

  • stop taking the medicine if there is no benefit at the maximum tolerated dose (explain that baclofen can cause harm if stopped suddenly and that special precautions may be needed when stopping specific medicines)

  • have their medicines reviewed at least annually once the optimal dose has been reached. [2022]

    See the BNF and the summary of product characteristics for baclofen and gabapentin for advice on optimising dosage and stopping treatment and, if relevant, treating people with renal impairment and older people. For more information on reviewing and withdrawing gabapentin, see NICE's guideline on medicines associated with dependence or withdrawal symptoms.

1.5.30

Consider a combination of oral baclofen and gabapentin for people with MS if:

1.5.31

If spasticity is causing significant impairments in mobility, posture or function and initial treatments are unsuccessful, refer to a multidisciplinary team experienced in the management of spasticity for assessment and treatment planning. [2022]

For a short explanation of why the committee made these recommendations and how they might affect practice, see the rationale and impact section on spasticity.

Full details of the evidence and the committee's discussion are in evidence review F: pharmacological management of spasticity.

Oscillopsia

1.5.35

Refer the person with MS for specialist advice if there is no improvement in oscillopsia after treatment with gabapentin and memantine or if side effects prevent continued use. [2014]

Emotional lability

Pain

1.5.37

Assess and investigate the cause of pain to establish a diagnosis and offer treatment specific to the cause of the pain. [2022]

For a short explanation of why the committee made these recommendations and how they might affect practice, see the rationale and impact section on pain.

Full details of the evidence and the committee's discussion are in evidence review G: non-pharmacological management of pain.

Cognitive and memory problems

1.5.41

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. [2022]

1.5.42

Assess cognition as part of the person's comprehensive review. Tailor the assessment to the person's needs, for example, use a clinic interview or brief formal assessment, or consider referral for a full neuropsychological assessment if needed. [2022]

1.5.44

Consider referring people with MS and persisting cognitive impairments to an occupational therapist and/or a neuropsychologist to assess and manage these symptoms according to the person's needs. [2022]

For a short explanation of why the committee made these recommendations and how they might affect practice, see the rationale and impact section on cognitive and memory problems.

Full details of the evidence and the committee's discussion are in evidence review H: non-pharmacological management of memory and cognitive problems.

Ataxia and tremor

The evidence was reviewed for the pharmacological management of ataxia and tremor, and the committee made a recommendation for research.

For a short explanation of why the committee only made a recommendation for research, see the rationale section on pharmacological management of ataxia and tremor.

Full details of the evidence and the committee's discussion are in evidence review I: pharmacological management of ataxia and tremor.

Dystonia and tremor

For guidance on deep brain stimulation for tremor and dystonia, see the NICE interventional procedures guidance on deep brain stimulation for tremor and dystonia (excluding Parkinson's disease).

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. [2014]

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. [2014]

1.6.3

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

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. [2014]

1.6.7

Ensure people with MS and severely reduced mobility are regularly assessed and reviewed for risk of contractures (shortening of tendons, muscles or ligaments that limits joint movement). [2014]

1.6.10

Refer people with MS to palliative care services for symptom control and for end of life care when appropriate. [2014]

1.7 Relapse and exacerbation

Recognising a relapse

1.7.1

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. [2014]

1.7.2

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. [2014]

1.7.3

Do not routinely diagnose a relapse of MS if symptoms are present for more than 3 months. [2014]

Treating acute relapse of MS

1.7.4

Develop local guidance and pathways for timely treatment of relapses of MS. Ensure follow up is included in the guidance and pathway. [2014]

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. [2014]

1.7.6

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. [2014]

1.7.7

Offer treatment for relapse of MS with oral methylprednisolone 0.5 g daily for 5 days. [2014]

1.7.8

Consider intravenous methylprednisolone 1 g daily for 3 to 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. [2014]

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. [2014]

1.7.10

Do not give people with MS a supply of steroids to self‑administer at home for future relapses. [2014]

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. [2014]

1.7.12

Explain the potential complications of high‑dose steroids, for example temporary effects on mental health (such as insomnia, depression, confusion and agitation) and worsening of blood glucose control in people with diabetes. [2014]

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. [2014]

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. [2014]

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. [2014]

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. [2014]

1.7.17

Explain that a relapse of MS may have short‑term effects on cognitive function. [2014]

1.7.18

Identify whether the person with MS having a relapse or exacerbation needs additional symptom management, rehabilitation or consideration for disease-modifying treatments. [2014 amended 2022]

1.8 Other treatments

Disease-modifying treatments

NICE has published technology appraisal guidance on disease-modifying treatments for MS. For full details, see NICE's technology appraisal guidance on multiple sclerosis.

Vitamin D

1.8.1

Do not offer vitamin D solely for the purpose of treating MS. [2014]

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. [2014]

Terms used in this guideline

This section defines terms that have been used in a particular way for this guideline.

Advanced MS

MS is described as 'advanced' when it has progressed to the point where a person is severely affected by their symptoms and has significant ongoing physical or cognitive impairment (this typically happens in the late stages of primary and secondary progressive MS). People with advanced MS are unable to carry out most of their usual activities of daily living independently and need other people to assist them. The term is used to describe the level of burden rather than the type or duration of the MS.