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Summary for primary care

Multiple Sclerosis in Adults: Management

NICE

Overview

This Guidelines summary covers diagnosing and managing multiple sclerosis in adults. It includes recommendations on diagnosis, assessment, coordination of care, pharmacological and non-pharmacological management of symptoms, and relapse.

For a complete set of recommendations, refer to the full guideline.

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.

  • 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.
  • Be aware that usually people with MS present with neurological symptoms or signs as described in the previous recommendation, 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.
  • 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.

Initial Assessment

  • 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.

Referral and Diagnosis

  • 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.
  • 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.
  • 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.
  • Do not diagnose MS on the basis of MRI findings alone.
  • Offer people with confirmed MS information and advice on resources and support. For further details, see the section on information and support at the time of diagnosis in the full guideline.

Optic Neuritis and Neuromyelitis Optica Spectrum Disorder

  • If a person has an episode of isolated, optic neuritis, confirmed by an ophthalmologist, refer them to a consultant neurologist for further assessment.
  • Diagnosis of neuromyelitis optica spectrum disorder should be made by an appropriate specialist based on established up-to-date criteria.
For recommendations on providing information and support, refer to the full guideline.

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.

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

Modifiable Risk Factors for Relapse or Progression of MS

Exercise

  • 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.

Smoking

Vaccinations

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.
  • 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).
  • 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.

Fatigue

Assessment and non-pharmacological management of fatigue
  • Ask people with MS if they are experiencing fatigue, sudden tiredness or a change in their energy levels affecting their daily living.
  • 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:
  • Explain that MS-related fatigue may be brought on by heat or biological, physical and emotional stress.
  • 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.
  • Advise people that aerobic, resistive and balance exercises, including yoga and pilates, may be helpful in treating MS-related fatigue.
  • 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.
  • 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.
  • Do not use vitamin B12 injections to treat fatigue in people with MS.
  • Do not offer hyperbaric oxygen to treat fatigue in people with MS.
See also the section on non-pharmacological management of mobility problems and fatigue.

Pharmacological Management of Fatigue

  • 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.
  • If a person with MS wishes to try a medicine for fatigue, refer them to a specialist to fully discuss the treatment options.
  • 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:
  • Regularly review treatment to monitor effectiveness, safety and acceptability, adjust the dose, and decide whether to continue or stop the medicine:
    • Agree the frequency of review with the person with MS, taking into account the medicine that they are taking, the need for dose adjustments and the person’s preferences and circumstances.
    • For more information, see the section on medication review in NICE’s guideline on medicines optimisation and, for reviewing SSRIs, see the section on reviewing medicines in NICE’s guideline on medicines associated with dependence or withdrawal symptoms.
  • When the person with MS is on a stable dose of a medicine for fatigue, subsequent prescriptions may be issued by another prescriber as part of a shared-care agreement under the direction of the initiating specialist prescriber. For more information about shared care, see NHS England’s guidance on responsibility for prescribing between primary and secondary/tertiary care.

Mobility Problems

See also the first recommendations in the section on modifiable risk factors for relapse or progression of MS 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.

  • 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.

Pharmacological Management of Mobility Problems

  • 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.
  • 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.

Non-pharmacological Management of Mobility Problems and Fatigue

  • Consider vestibular rehabilitation for people with MS who have fatigue or mobility problems associated with limited standing balance.
  • Consider supervised exercise programmes involving moderate progressive resistance training and aerobic exercise to treat people with MS who have mobility problems or fatigue.
  • 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.
  • 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.
  • Encourage people with MS to keep exercising after treatment programmes end for longer-term benefits (see NICE’s guideline on behaviour change: individual approaches).

Spasticity

  • 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.
  • 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.
  • 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.
  • 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.
  • 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.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.
  • 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.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.
  • Consider a combination of oral baclofen and gabapentin for people with MS if:
    • individual medicines do not provide adequate relief or
    • side effects from individual medicines prevent the dose being increased.See the BNF and the summary of product characteristics for baclofen and gabapentin. Use caution when using these medicines in combination because of the risk of severe respiratory depression (see the 2017 MHRA advice on gabapentin: risk of severe respiratory depression). For guidance on safe prescribing of gabapentin and managing withdrawal, see NICE’s guideline on medicines associated with dependence or withdrawal symptoms.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.
  • 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.
  • For guidance on THC:CBD spray for treating spasticity in people with MS, see the recommendations on spasticity in NICE’s guideline on cannabis-based medicinal products.

Oscillopsia

  • Consider gabapentin as a first-line drug to treat oscillopsia 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.In June 2022, this was an off-label use of gabapentin. See NICE’s information on prescribing medicines and the 2019 MHRA drug safety update on pregabalin, gabapentin and risk of abuse and dependence.
  • Consider memantine as the second-line treatment for oscillopsia in people with MS.In June 2022, this was an off-label use of memantine. See NICE’s information on prescribing medicines.
  • 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.

Emotional Lability

  • Consider amitriptyline to treat emotional lability (involuntary laughing and crying related to a frontal lobe lesion) in people with MS. For guidance on safe prescribing of antidepressants and managing withdrawal, see NICE’s guideline on medicines associated with dependence or withdrawal symptoms.In June 2022, this was an off-label use of amitriptyline. See NICE’s information on prescribing medicines.

Pain

Cognitive and Memory Problems

  • 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.
  • 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.
  • Be aware that anxiety, depression, difficulty sleeping, fatigue and medication can affect cognition. Assess for and offer management appropriate for these issues in people with MS and cognitive or memory problems (for example, see the section on fatigue and NICE’s guidelines on generalised anxiety disorder and panic disorder in adults and depression in adults with a chronic physical health problem).
  • 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.
For recommendations on ataxia and tremor, dystonia and tremor, and comprehensive review, refer to the full guideline.

Relapse and Exacerbation

Recognising a Relapse

  • Diagnose a relapse of MS if the person:
    • develops new symptoms or
    • has worsening of existing symptomsand 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.
  • 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.
  • Do not routinely diagnose a relapse of MS if symptoms are present for more than 3 months.

For more recommendations on relapse and exacerbation, refer to the full guideline.

References

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