Multiple sclerosis in adults: management

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]

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]

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]

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]

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]

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]

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]

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

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. [2022]

If a person has an episode of isolated, optic neuritis, confirmed by an ophthalmologist, refer them to a consultant neurologist for further assessment. [2014]

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

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]

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]

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]

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]

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]

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]

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]

Talk to people with MS and their family members or carers about the possibility that the condition might lead to cognitive problems. [2014]

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]

Explain to carers (including young carers) about their right to a carer's assessment and tell them about other sources of information and support that may be available (see NICE's guideline on supporting adult carers and the Young Carers [Needs Assessment] Regulations 2015). [2022]

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]

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]

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]

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

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]

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 advice on identifying people who may be approaching the end of their life and providing information and support, follow the recommendations in NICE's guideline on end of life care for adults. [2022]

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. Think about discussing advance care planning early if you expect the person's ability to communicate, cognitive status or mental capacity will deteriorate. Follow the recommendations on advance care planning in NICE's guideline on decision making and mental capacity. [2022]

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]

Advise people with MS not to smoke and explain that it will increase the progression of disability. (See NICE's guideline on tobacco: preventing uptake, promoting quitting and treating dependence.) [2014, amended 2022]

Offer vaccinations in line with advice from the Joint Committee on Vaccinations and Immunisation and the Green Book: Immunisation against infectious disease for people with MS and their carers. [2014, amended 2022]

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]

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]

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]

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]

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]

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.

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.

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. [2022]
  
  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. [2022]

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. [2019]

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. [2014]

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. [2014]

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. [2014]

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. [2014]

In June 2022, this was an off-label use of amitriptyline. See NICE's information on prescribing medicines.

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

Be mindful of the impact of pain on the mental wellbeing of people with MS, and provide advice and support. See NICE's guideline on depression in adults with a chronic physical health problem. [2022]

Treat neuropathic pain in people with MS and refer people to pain services according to NICE's guideline on neuropathic pain in adults. [2022]

Be aware that musculoskeletal pain is common in people with MS and is usually secondary to problems with immobility, spasticity and posture. Assess musculoskeletal pain and offer treatment appropriate to the cause, for example see the sections on managing mobility problems and spasticity, and NICE's guideline on low back pain and sciatica in over 16s. [2022]

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]

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]

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). [2022]

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]

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]

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]

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

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

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]

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]

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

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]

Do not prescribe steroids at lower doses than methylprednisolone 0.5 g daily for 5 days to treat an acute relapse of MS. [2014]

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

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]

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]

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]

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]

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]

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]

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

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]

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

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]