Work and MS

How can work be affected by Multiple Sclerosis (MS)?

MS can lead to challenges in the workplace due to its unpredictable nature and possible physical and cognitive symptoms. Different jobs come with different problems, and some jobs are quite challenging for people with MS. Here are some common work difficulties individuals with MS may face:

Fatigue - MS fatigue can be debilitating and is the most common reason why people with MS stop work. Work can be tiring, and the effort it takes can build up quickly. This can make it hard to keep up with everything you need to do. Work-life balance can quickly be lost and sometimes people spend all their down time recovering their energy in order to complete their work.

Mobility and physical difficulties – these difficulties will include problems with balance, walking and things that involve using your fingers and hands carefully (dexterity skills). This can make it a challenge to perform certain job tasks or get around the workplace.

Cognitive impairment - cognitive problems, such as memory issues, difficulty concentrating, or slower thinking can affect how well you do your job, especially if your work involves making decisions or solving problems.

Visual disturbances - jobs that involve reading, using a computer, or detailed visual tasks can be harder if MS affects your eyesight.

Bladder and bowel issues - bladder and bowel problems can mean frequent toilet breaks are needed and this can prove challenging in certain work roles and environments.

Temperature sensitivities – heat or cold can make MS symptoms worse. Work environments where the temperature isn't controlled can be difficult for some people with MS.

Stress - trying to manage MS and complete all work duties can create a lot of stress, especially if you are worrying about how it might affect your finances. Stress is known to make MS symptoms.

It is important to address work issues before they reach crisis point.

Don't rush Into a decision

If you have just been diagnosed with MS, had a relapse, or are experiencing new symptoms, it is important not to rush into a decision regarding work. Any decisions you make at this time, such as whether to give up work or tell your employer, may not be the right ones for you in the long term.

Instead, take some time to think things through and get used to what's happening. You may find it helps to talk through your options with someone you trust, like a family member, friend, or health care professional.

Please see the link below for some initial advice regarding work and reasonable adjustments.

https://www.mssociety.org.uk/care-and-support/everyday-living/working-and-ms/work-ms-and-you

The MS Occupational Therapists that work within the Dorset MS service can provide expert advice and support regarding work.

What work support do the MS Occupational Therapists offer?

Helping you stay in employment and working in a way that is manageable and sustainable whilst meeting your work demands and maintaining good health.

This can include:

• Writing letters of support recommending reasonable adjustments
• Educating employers about your condition or needs
• Work-based visits and general advice on things like reasonable adjustments or equipment
• Signposting to schemes such as access to work
• Advice on altered work hours and possible re-deployment
• Advice when considering alternative employment

If after implementing reasonable adjustments work continues to be detrimental to your health and wellbeing, you may want to consider the option of ill-health retirement or leaving work. This is a very individual decision and would require careful consideration. The MS Occupational Therapists can offer support through this process.

Disclosure

Disclosing your diagnosis is a personal decision. Legally you are not obliged to disclose your diagnosis, although there are some exceptions.

Legally you must disclose if you:

• Are in the armed forces
• Drive for a living such as HGV or taxi driver
• Your MS may affect yours or others' health and safety at work

Benefits of Disclosure

The Equality Act 2010 states that your employer has a legal obligation to consider reasonable adjustments to your work role. Reasonable adjustments can be anything that assists you to perform your job effectively. The law says employers must consider reasonable adjustments, but it doesn't give a fixed definition. Telling your employer about your MS can help start an open conversation about what support you might need at work. An employer can not make reasonable adjustments if they are unaware of your diagnosis.

Generally, from our experience in Dorset, in most circumstances, it is better to have this open and honest communication before problems arise.

Reasonable Adjustments - Talking with your employer can help you find ways to manage your energy, take regular breaks, adjust your tasks if needed, and explore helpful tools or equipment for things like movement, vision, or cognition (thinking processes). It also allows the MS OT to support you in asking for more suitable work conditions, such as disabled parking space. Sharing your needs can help create a more understanding and supportive workplace for everyone.

Legally Protected - The Equality Act 2010 prohibits employers discriminating against people with MS in areas of recruitment, promotion, and dismissal. You are entitled to Statutory Sick Pay (SSP) if you are unable to work due to your MS. You also have access to the Access to Work Scheme which helps provide practical support and can include funding for specialised equipment, support workers and adaptations to the workplace.

Confidentiality - Employers are legally required to keep medical conditions, including MS confidential. Information about your health should only be shared with people who need to know and make necessary adjustments.

Other useful contacts

Disability Law Service: Has an MS specific advisor who can support you with any queries regarding potential discrimination:

Tel: 0207 791 9800

Email: This email address is being protected from spambots. You need JavaScript enabled to view it.

Access to Work Scheme: This is a government run scheme to help people with a disability to stay in work. You can make a self-referral online at:

https://www.gov.uk/access-to-work

ACAS: Works with both employers and employees offering impartial advice to resolve problems and/or conflict in the workplace:

Tel: 0300 123 1100

https://www.acas.org.uk/advice

Below are two very useful guides for you and your employer regarding work:

Work and MS an employees guide | Multiple Sclerosis Society UK

MS in the workplace: an employer's guide (booklet) | MS Society

What is an MS relapse?

An MS relapse is the clinical presentation (symptoms you experience) when there is a new episode of inflammatory activity in an area of your brain or spinal cord. Depending on where the area (or areas) of inflammation is, will lead to the symptom (or symptoms) you may experience.

Relapses can be mild, or severe enough to interfere with your usual everyday life. No two relapses are the same, and symptoms will vary from person to person and from one relapse to another.

Some people call MS relapses by different names, which can be confusing. Some other terms used for relapse are: exacerbation, flare up, attack.

To be classified as a true clinical relapse:

• Symptoms must last at least 24 hours (however relapse symptoms generally last for days, weeks or even months)
• There must be new symptoms (or old symptoms must be worse than they have been)
• Symptoms must occur at least 30 days from the start of the last relapse
• There must be no active infection
• There must be no other explanation or trigger for the symptoms (See triggers below for more information on what these could be)

In practice, even for professionals working in the field of MS, it can be difficult to determine if some symptoms are a true relapse or not.

What can I expect from an MS relapse?

In an MS relapse, symptoms usually develop over a few hours to a few days before reaching their worst. They then might stay at this level for a few days before starting to improve. It is then expected that recovery will happen over a few weeks, but it can take several months.

Your symptoms may fully resolve, or you may be left with some symptoms from a relapse. The MS Society states that 'around half of all relapses may leave some lingering problems' Relapsing Remitting MS (RRMS) - MS Relapse Signs | MS Society

Even if your symptoms fully resolve, areas of damage from a relapse (episode of inflammation) may still be present in your brain or spinal cord and may remain visible on an MRI scan.

What isn't a relapse?

It is very common for the symptoms that you have had previously to come and go. This is because your nervous system is continually dealing with (compensating for) the damage caused by previous MS relapses, so that you don't always experience the symptoms at all, or as badly as you have had them in the past.

Your nervous system can often manage this quite successfully while it is only your MS symptoms that it is having to juggle. As soon as it has to juggle other things, (see triggers below) it becomes too much for your nervous system, so your 'MS symptom juggling balls' may get dropped temporarily and your MS symptoms may return.

Old symptoms that come back less frequently may be because you don't have triggers (or are managing the triggers well), or because they need a more significant trigger to make them appear

When you are first diagnosed with MS, it can be difficult to know whether your symptoms are a relapse or not. Over time, you'll learn what's normal for you with your MS and symptoms.

We usually describe the return of old symptoms, because of one or more triggers, as 'decompensation' or 'pseudo-relapse', but it can also be called 'ghosting' or 'flare-up'.

Decompensation isn't due to new inflammatory activity and damage and doesn't mean that your MS has become out of control.

It also means that generally once the trigger is removed, it would be expected that the symptoms would return to their previous level.

Triggers for symptoms worsening or coming back

Anything that affects you or your body can be a trigger.

This could be something happening to your body or something affecting how your body usually functions.

Here are some examples of things that can be a trigger for worsening of MS symptoms, (but is not a complete list):

• Infection (e.g. urinary tract or chest infections, colds, flu, Covid, dental infection)
• Constipation
• Broken skin or skin irritation (including pressure sores or other wounds)
• Pain
• Another condition (such as kidney stones, irritable bowel syndrome, arthritis)
• Stress or anxiety
• Low mood or depression
• Over-doing things (being too busy/not having sufficient rest)
• Lack of (or disturbed) sleep
• Menstrual period or menopause
• Hot (or cold) weather

What causes relapses?

Relapses often happen for no reason, but we know that there are some things that make them more likely.

Not treating your MS

Disease modifying drug (DMD) treatments can reduce how many relapses you have and how bad they are. They make the biggest difference in your likelihood of having MS relapses. See Disease Modifying Drugs (DMD) for more information about these treatments.

Smoking

People who smoke are likely to have more relapses than people who don't smoke.

Smoking has also been found to reduce the effectiveness of some of the MS disease modifying drugs. This means they may not protect you from MS relapse as well, if you smoke. More information about smoking and MS can be found on the MS Trust website Smoking | MS Trust and the MS Society Smoking and MS | MS Society.

Infection

Severe infections can trigger a relapse. It is therefore important that you see your GP if you feel you may have an infection to get assessed and treated if indicated.

It is also advised that you have any immunisations recommended as part of national vaccination programmes or by your GP, e.g. Covid, Shingles, Flu vaccines.

Other

There are other things that are linked with an increased risk in relapse but there is not as much research evidence to back these up. These include:

• Stress
• Low vitamin D levels

This means that leading as healthy a lifestyle as possible is important in reducing the risk of MS relapse.

Different types of MS relapse

• Sensory - reduced or altered sensation (feeling)
• Motor - weakness
• Cognitive - affecting thinking processes
• Optic neuritis - affecting the optic nerve which will give visual symptoms (Vision)
• Mixed relapse - where you have more than one of these types

Steroids (Methylprednisolone)

Steroids can be used to treat relapses, but not all relapses need treatment with steroids.

Steroids work on the inflammatory process and not the MS damage itself. This means steroid treatment won't affect how well you recover from a relapse, it only speeds up recovery time.

We also know from evidence that steroid treatment in MS works better in some types of relapses than others.

Steroid treatment would only be suggested should your relapse be particularly disabling and a clinician feels that it is required.

If steroid treatment is suggested for you, the NICE (The National Institute for Health and Care Excellence, MS Guideline: Recommendations | Multiple sclerosis in adults: management | Guidance | NICE) recommended treatment course is:

• Methylprednisolone tablets - 500mg daily for 5 days

Steroids are not helpful in decompensation/pseudo-relapse as there isn't any inflammation present for the steroids to work on.

What to do if you think you may be having a relapse

If you think you may be having a relapse:

• Keep a diary of your symptoms as this is useful to remember dates and exactly what is happening and when
• f your symptoms last for more than 24 hours, call or email the MS Service Helpline on 0300 019 2362 or This email address is being protected from spambots. You need JavaScript enabled to view it. and leave a message stating that you think you may be having a relapse, and leave a brief description
• You will be placed in the next available helpline duty clinic with one of the MS practitioners. This is likely be the same day or next working day (depending on when you contact the service)
• The practitioner will go through some questions, which will include going through possible triggers. It would be useful for you to go through possible triggers before you speak to the practitioner (see Triggers section above)
• The practitioner may offer advice over the phone or may suggest that you attend an Acute MS Symptom Clinic at Poole Hospital

If you feel you need urgent medical advice, please contact 111. If you feel your condition is life threatening, please call 999 or go to an Accident & Emergency Department.

What is MS and what causes MS?

What is MS?

Multiple Sclerosis (MS) is a neurological condition which affects the central nervous system (the brain and spinal cord).

Sclerosis means 'scarring' and refers to the areas of the brain or spinal cord which have been affected by MS. Multiple because these generally happen in more than one place.

No two people with MS are the same – the symptoms people experience will relate to where and how many areas in their central nervous system are affected.

Most people are diagnosed in their 20s or 30s but MS can be diagnosed in people younger or older than this.

It is estimated that there are around 150,000 people with MS in the UK and, although there is not yet a comprehensive registry of people with MS, we believe that there are around 2260 people living with MS in Dorset.

What happens in MS?

Our nerves work very similarly to an electric cable. In an electric cable, current passes though the wire from one end to another. The plastic covering helps to prevent damage and insulates the wire so that it doesn't short circuit.

Myelin is the covering of a nerve and acts like the plastic covering on a cable – it protects the nerve fibres from damage and allows messages to be passed along the nerves quickly and without being interrupted.

Damage to myelin and nerve fibres leads to messages being slowed down or not getting through. This causes the symptoms people experience in MS. The specific symptoms that appear depend on the role of the damaged nerve and which bit of the brain or spinal cord it is in.

What causes MS?

We don't know exactly what causes MS, but it's likely to be a mix of things like your genes, your environment, and your lifestyle. It is likely that several different things need to come together to trigger MS. Not enough is known yet to be able to know who will or won't get MS.

The most agreed theory is that MS is an autoimmune disorder. This means that the body's natural defences can't tell the difference between its own cells and foreign invaders (such as bacteria), which leads to the nerve cells being attacked in MS.

Risk factors

Genetics

MS is not considered hereditary (directly passed from parent to child). There is no one gene that directly causes MS, but over 230 genes have been found which increase the risk of developing MS to a small degree.

Because family members share some of the same genes, this does mean that there is a higher risk of developing MS if you have a family member with it.

When a parent has MS then approximately 98% of children will not develop MS. When both parents have MS approximately 80% of children will not develop MS.

Geography

MS is more common in countries further away from the equator. The further north or south you go from the equator the chance of developing MS increases. It is not known exactly why this is, but it may be related to the level of Vitamin D you absorb in the warmer climates versus the colder ones. Or it may be related to the type of viruses that live in the colder countries and the risk of being exposed to one of those viruses as a child or teenager.

Vitamin D

The role of Vitamin D is largely unknown, however, it is essential for immune system regulation and bone health.

Research has shown that low levels of Vitamin D are linked with an increased risk of getting MS, and with more frequent relapses in people who have MS.

Viruses/Epstein Barr Virus (EBV)

It has been suggested that the autoimmune behaviour found in MS could be caused by a virus.

The Epstein Barr Virus (EBV) is a common virus that causes glandular fever (typically in children or teenagers). Once EBV is acquired, it is carried for life, usually with no harmful effects.

There is evidence to suggest a possible link between MS and EBV. Having EBV doesn't mean you will get MS (over 90% of the population worldwide has been infected with EBV), but there is research which suggests virtually everyone with MS has had EBV infection.

Smoking

There are several studies which have shown that if you smoke, this adds to the risk of you developing MS.

Smoking can make MS worse. Please see the following links for more information:

Smoking and MS | MS Trust

Smoking and MS | MS Society

Obesity

Studies have shown that being overweight as a child or teenager leads to an increased risk of developing MS.

Having a higher body mass index (BMI) has been associated with several changes in the body and more research is needed to identify which of these could contribute to the development of MS.

More information on living well with MS can be found in Living Well with MS.

More information about what MS is and what causes it can be found on the MS Trust and MS Society websites:

What is MS? | MS Trust

Causes of MS | MS Trust

What is MS? | MS Society

Vision

Problems with vision in MS

MS can lead to differing types of visual problems and these symptoms are dependent on where the areas of MS damage are in your nervous system.

Not all visual symptoms are related to MS. As part of living well with MS, as well as general eye health, it is recommended that you have regular eye tests. More information on eye health can be found here: NHS England » Eye health

More information on visual symptoms in MS can be found on the MS Trust and MS Society websites:

Visual problems | MS Trust

MS eye and vision problems | MS Society

Optic Neuritis

Optic neuritis is a common symptom of MS. It is where the optic nerve is affected by inflammation and/or demyelination.

Optic neuritis is a condition on its own. Not everyone who gets optic neuritis will go on to develop MS, but about half of people with MS are likely to have an episode of optic neuritis.

Symptoms of optic neuritis usually occur in one eye and can include:

• Blurred vision
• Blind spots
• Changes to colour vision (how you see colours)
• Reduced field of vision
• Reduction in vision itself
• Pain or discomfort on movement of your eye

Symptoms of optic neuritis usually get worse over a few days to a couple of weeks, and then last for 4-6 weeks, (although it can be quicker or slower).

If you think you may have optic neuritis, please contact the MS Service helpline on telephone - 0300 019 2362 or email This email address is being protected from spambots. You need JavaScript enabled to view it..

It may be recommended that you are seen by a specialist eye unit to assess you and confirm you have optic neuritis. If this is the case, you can self-refer to Royal Bournemouth Hospital if you live in the East of the County. If you live in West or North Dorset, your GP will need to refer you to Dorset County Hospital Eye Unit.

Most optic neuritis recovers on its own, but on rarer occasions steroids may be recommended (see Steroids section in 'What is a relapse?').

Most people's sight recovers well, but some people find that they have continued changes in their vision.

See the MS Trust and MS Society websites for more information on optic neuritis:

Optic neuritis | MS Trust

Optic Neuritis - Symptoms, Treatment & Recovery | MS Society

Double Vision (Diplopia)

If the nerves that control the movement of your eyes are damaged, it can lead to an imbalance of alignment of your two eyes which means that you get double vision (seeing two of something when there is only one).

If this is related to a relapse, most people's sight recovers well, but some people find that they have continued changes in their vision (see 'What is a relapse?' section).

Some people with double vision find it useful to use a patch over one eye. If problems persist, your GP might consider referring you to an eye unit for assessment and advice.

The eye unit may suggest no intervention or may recommend things like prisms on glasses (known as Fresnel prisms), or on rarer occasions, botulinum toxin injections or surgery to try and adjust the muscles of your eyes to bring them back into alignment.

Nystagmus (Involuntary Eye Movements)

Nystagmus is a rhythmical, repetitive, and involuntary movement of the eyes. It is usually a side-to-side movement, but can also be up and down, or in a circular movement.

Nystagmus is found in several conditions including MS. In MS, it can be caused by damage to the optic nerve, or damage to areas of the brain which are responsible for vision, coordination, and balance (the cerebellum or brainstem).

You may not notice that you have nystagmus if your vision isn't affected, but a Neurologist or MS Practitioner may pick this up in an assessment.

If it is a symptom that is noticeable, it can make you feel dizzy, nauseous, or having a feeling of vertigo.

It is often a difficult symptom to treat, and most options for managing it are based around strategies to compensate for it.

The MS Trust and MS Society have more information on their websites about nystagmus and managing it:

Nystagmus | MS Trust

MS eye and vision problems | MS Society

Visual Symptoms Related to MS Disease Modifying Drugs Treatments (DMD)

Some MS disease modifying drug treatments (DMDs) have side effects related to vision.

If you are eligible (and it is recommended) that you have DMD treatment, side effects of each treatment will be discussed with you as part of your drug counselling.

Once you start DMD treatment, if your treatment has the potential for visual side effects, this will be discussed at DMD reviews with your neurologist or MS Nurse, Practitioner or Pharmacist.

More information can be found in this booklet.

MS and your eyes LARGE PRINT M SS.pdf (mssociety.org.uk)