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According to the MS Society, there are more than 130,000 people with a multiple sclerosis (MS) diagnosis in the United Kingdom. Every year, almost 7,000 people receive a new diagnosis of the condition. These figures mean that one in 500 people live with MS and more than 130 people every week receive a diagnosis.
In fact, MS is the most common of all disabling neurological diseases for young adults. Most people receive a diagnosis in young adulthood (the 20s and 30s), and it affects women more. There are different types of MS, which we’ll discuss later. Firstly, let’s learn more about what multiple sclerosis is.
What is MS?
MS (multiple sclerosis) is a medical condition affecting the spinal cord and brain. When you have this condition, the coating of the brain that protects the nerves, called the myelin, is damaged. Because of this damage, people experience symptoms that are varied. For some, it will affect how they feel and think, and it can cause things like blurred vision.
To understand the condition fully, it’s quite useful to have an understanding of how our central nervous system functions.
Myelin, the part that is damaged in MS, protects the central nervous system’s nerve fibres. This helps messages between the brain and the body travel smoothly and quickly.
When you have MS, your own immune system mistakes this substance as something foreign, attacking it. These immune attacks strip the myelin off nerve fibres leaving plaques or lesions, which are essentially scars. The myelin can be completely stripped off or partially.
When this damage occurs, it disrupts messages as they travel along the nerve fibres. The messages might be slower, distorted, or missing entirely.
In addition to myelin loss, sometimes the nerve fibres can be damaged too. Over time, this can make an MS sufferer deteriorate and be more affected by their condition.
What causes MS?
While it’s useful to know what MS is, it’s also useful to know its causes. Unfortunately, there is no definite answer.
Experts believe that multiple sclerosis is triggered for many reasons. There is currently lots of research underway to identify causes.
Research looks at:
- Epidemiology (the disease patterns in big groups).
- Immunology (studying the immune system).
- Genetics (studying the genes of those who suffer from the condition).
- Infectious agents (like viruses).
In the United States, the National Institute of Neurological Disorders and Stroke (NINDS) is the leading research funder for MS in America. They provide grants to universities all over the United States to research the condition.
In the United Kingdom, the MS Society funds a lot of research. Their current priorities include researching how MS can be prevented and what treatments are most effective.
When the causes of MS are more understood, it will be much easier to find effective treatments. It might even be possible to cure the disease or prevent it from happening altogether.
Immunologic factors at play in MS
With multiple sclerosis, the body has an abnormal response that causes damage and inflammation to the central nervous system. Lots of different cells play a part in this immune response – two of them being B cells and T cells.
These become activated in MS and get into the central nervous system through the blood. When they have entered the central nervous system, they release chemicals causing damage and inflammation. The damage occurs to the cells that make up myelin as well as the nerve fibres that myelin protects.
T cells are essential in activating B cells – and they call other cells of the immune system to participate in attacking the myelin.
One type of T cell is the T regulatory cell. This turns off or dampens inflammation. In multiple sclerosis, however, these don’t work properly and so can’t turn inflammation off.
Cytotoxic T cells (killer T cells) attack certain cells directly and destroy them.
These become activated due to T cells. They make antibodies and stimulate proteins in the body. In MS, B cells cause central nervous system damage.
Environmental factors at play in MS
There isn’t a single environmental factor that is a definitive cause of MS. However, there are several environmental factors that are thought to contribute to a person’s chances of developing the condition.
Multiple sclerosis occurs more frequently the further you go from the equator. Epidemiologists are researching geography variations and migration patterns to try to understand this phenomenon more.
Research has shown that if you’re born in a high-risk area and then migrate to a low-risk area before fifteen years old, you have the risk of the new, low-risk area. There is, however, data that suggests exposure to environmental agents before puberty can predispose a person to developing multiple sclerosis later.
Infectious factors at play in MS
Lots of bacteria and viruses, including canine distemper, EBV (Epstein-Barr virus), measles, chlamydia, pneumonia, and human herpes virus-6 are being investigated as possibly being involved in MS development.
The Epstein-Barr virus – the virus that causes glandular fever – has been a focus of attention recently. Lots of research has indicated that a person who has been infected with EBV is much more likely to develop MS.
Genetic factors at play in MS
Multiple sclerosis cannot be inherited and so just because a person has MS, doesn’t mean their children will. However, you can inherit a genetic predisposition or risk. In the whole population, there is a risk of between 1 in 750 and 1 in 1000 developing MS.
Genetics do play a role somewhat because if one identical twin has MS, the other has a 1 in 4 chance of developing the condition too. A person’s risk is also increased if a first-degree relative like siblings, parents and children has the condition – but this risk is less than in twins.
There are around two hundred different genes that contribute in a small way to a person’s overall risk of getting multiple sclerosis. Research into genetic factors is happening in order to understand the role each of these genes plays.
Suggested (but unproven) theories
Over the years, there have been multiple suggestions of other causes of multiple sclerosis but many of these don’t have enough supporting evidence.
Some of these are:
- Exposure to pets in the home.
- Allergies in the environment.
- Exposure to heavy metals like mercury, manganese, or lead.
- Chemical/organic solvents.
Who is more at risk of MS?
Though anyone can get MS, there are several factors that put you more at risk. We’ll explore these now.
The majority of people get their diagnosis between 20 years of age and 50. Being younger or older than this doesn’t mean you’re not going to get it, however, as older adults and children can be diagnosed too, it’s just not as common.
Generally speaking, multiple sclerosis is more common in places that are further away from the equator. So, if you live in the north of Sweden, your risk of getting MS is higher than someone living in Ecuador.
Recent studies have shown women are three times more likely to have MS than men. This suggests that female hormones might play a role in a person’s susceptibility.
Research has shown that most ethnic groups have people with MS diagnoses, but it is more prevalent in those with white, northern European heritage.
What are the different types of MS?
There are three primary types of multiple sclerosis.
- Relapsing remitting MS (RRMS).
- Secondary progressive MS (SPMS).
- Primary progressive MS (PPMS).
Relapsing remitting MS
In relapsing remitting MS, people experience relapses consisting of attacks of both old and new symptoms. About 85% of those with MS have RRMS. Many of these take a DMT – disease modifying therapy – which slows down the MS and means fewer relapses.
The label ‘relapsing remitting’ is good at explaining MS to non-sufferers and can also help work out the best medication and treatments. What it can’t do, though, is predict how multiple sclerosis will affect the person.
For the majority of people who have multiple sclerosis, their disease begins this way.
Secondary progressive MS
SPMS – secondary progressive MS – is a stage that a lot of people go into after RRMS. With SPMS, the disability gets progressively worse. It means that relapses (where symptoms worsen before getting better) aren’t likely as symptoms become more permanent.
Before DMTs (disease modifying therapies) came along, relapsing remitting MS would generally become secondary progressive MS after 20 years or so.
Nowadays, however, DMTs are changing things. Fewer people are progressing to this stage and among those who do, it takes a longer time for it to happen.
Primary Progressive PPMS
Between 10% and 15% of people with MS have primary progressive MS. This version of MS gets its name because it is progressive from the very first symptoms. A person’s symptoms will gradually worsen over time instead of the person having relapses and remissions.
In PPMS, the first symptoms are often subtle and develop slowly. You might notice problems walking, for example.
No matter the symptoms a person has, their disease will progress uniquely. So, even though their symptoms will be worse eventually and gradually, they may have a lot of time when they’re staying well and not having any noticeable changes.
Typically, it is people aged 40 and older that are diagnosed with PPMS, though it can occur at a younger age.
Compared to RRMS (where more women have the condition compared to men), there are equal numbers of women and men with PPMS.
Symptoms-wise, there are many overlaps and similarities between those with PPMS and RRMS, it’s simply the progress and pattern of the disease that changes the diagnosis.
What are the signs and symptoms of MS?
There are many different MS symptoms, but no one’s experience of the condition is ever the same.
Here are some of the most common symptoms associated with multiple sclerosis:
- Tingling or numbness (often like pins and needles).
- Eye/vision problems.
As we’ve seen, the symptoms can come and go, and they can also change. They can also be mild, severe or everything in between. Essentially it depends on which nerves are affected as to which symptoms a patient has.
Visible symptoms of multiple sclerosis
Some symptoms are more obvious and visible.
- Speech problems.
- Muscle spasms or stiffness.
- Dizziness and loss of balance.
Invisible symptoms of multiple sclerosis
These symptoms aren’t obvious to the outside, they include:
- Bladder problems.
- Bowel trouble.
- Difficulty with swallowing.
- Problems with oral health.
Thinking, memory and emotions
For some MS sufferers, their condition affects their emotions, thinking and memory.
How does MS affect someone’s life?
From dressing to toileting, walking and eating, multiple sclerosis affects all parts of a person’s life, especially as it progresses. Thinking problems, memory, mobility issues, and mental fatigue make it difficult to keep a job. When weakness, neuropathy and muscle spasms are symptoms, they can affect day-to-day tasks like going to the toilet and eating.
Thankfully, research has meant lots of progress has been made in treatments to manage MS.
Living with MS
There is no cure for MS, but it isn’t a terminal illness or a death sentence. There are ways in which patients successfully manage their condition and lead purposeful and productive lives.
There are many ways in which people manage their lives with MS.
Here are some of the available strategies:
With MS, people often have difficulties with their mobility. Lots of these difficulties come from muscle spasms and leg weaknesses. Because of the combination of mobility issues with cognitive decline due to degradation of the central nervous system, mobility aids are often necessary for MS patients.
Mobility aids like walkers, canes, wheelchairs and rollators are used commonly by MS patients. With advanced disease, many patients use a mobility scooter.
Tools for ‘ease-of-use’
Things like long-handled shoehorns, ‘reacher grabbers’ and utensil grips help MS patients complete daily tasks more easily.
Whether it’s helping to dress, assisting in picking up things or helping counteract tremors, these aids make living with multiple sclerosis much more manageable.
Since MS impacts mobility in addition to coordination, flexibility and balance, it is important to prioritise a patient’s safety in their home.
Safety supports like railings, shower chairs, bed rails and raised seats for toilets are some useful supports.
How is MS diagnosed?
There are no laboratory tests, physical findings and symptoms that, on their own, determine if a person has MS. A doctor will use lots of different strategies to decide if a patient meets the diagnostic criteria for multiple sclerosis.
For a diagnosis, there must be all of the following:
- Evidence of two separate areas of damage. This could be in the optic nerves, spinal cord, and the brain – anywhere in the central nervous system.
- Evidence that both (or multiple) damaged areas occurred at separate times.
- All other diagnoses have been ruled out.
Evidence of damage typically comes from MRI scans. But tests on cerebrospinal fluid can be used too.
A doctor will take a detailed history to find out any present or past symptoms that could be explained by MS. They will also gather information about family history, illness history, environmental exposure, birthplace and places of travel.
They will also perform comprehensive neurological tests. These will test swallowing, strength, facial sensations and vision – everything to do with the cranial nerves. Other tests will examine reflexes, sensations, balance, coordination and walking.
In lots of cases, a neurological exam and medical history will mean there is enough evidence to meet the criteria for diagnosis. There will potentially be other tests to help confirm the diagnosis or to rule out other causes of a patient’s neurological symptoms.
How is MS treated?
There is no known cure for MS, but treatments and medicines will help to control the symptoms and prevent the progression of the disease.
The treatment will depend on the disease stage and the person’s symptoms.
It could include:
- Steroidal treatment.
- Specific treatment for symptoms.
- Disease Modifying Therapies (DMTs) to reduce the occurrence of relapses.
Treatment for MS symptoms
MS causes lots of different symptoms, as we’ve seen. Each symptom is treated differently. Here are some of the symptoms and how they’re treated.
There is a medicine that treats MS fatigue. This is called amantadine. It doesn’t have a hugely positive effect though.
General advice on treating fatigue includes:
- Having regular exercise.
- Using techniques to save your energy.
- Avoiding medication that is known to make you drowsy or worsen fatigue (like some painkillers).
- Keeping a healthy sleep pattern.
There is also specialist therapy or courses to help patients cope with the fatigue. This includes CBT – cognitive behavioural therapy.
Doctors can also look at other reasons for fatigue like depression, insomnia or anaemia. These will be treated differently.
Visual problems related to multiple sclerosis might improve on their own. Usually this happens within a few weeks and doesn’t need any specific treatment.
If visual problems are severe, a doctor might prescribe steroids to improve the recovery time.
For things like involuntary eye movements, a medication called gabapentin is sometimes given.
For double vision, a patient might be referred to an ophthalmologist (an eye specialist).
Stiffness and muscle spasms
Spasticity (stiffness) and muscle spasms can be eased with the help of a physiotherapist. If movement is restricted, stretching exercises can help.
For severe muscle spasms, a patient might be given a relaxant medicine like gabapentin, baclofen, diazepam, dantrolene, clonazepam, and tizanidine.
Medicines like these have side effects like nausea, diarrhoea, weakness and dizziness.
Problems with mobility are often due to spasticity and muscle spasms. They can, however, be caused by dizziness, balance problems, or muscle weakness.
People with mobility problems might benefit from:
- Physiotherapist-derived exercise programmes.
- Vestibular rehabilitation exercises (for balance problems).
- Medication to treat tremors or dizziness.
- Mobility aids like a wheelchair or walking stick.
- Adaptations at home, like railings or stairlifts – occupational therapists can carry out assessments for these.
This is caused by nerve damage. It is a pain that is typically a stabbing, sharp pain. It can also happen as a burning sensation or very sensitive skin.
There is pain management treatment for this neuropathic pain. This includes medicines like gabapentin, duloxetine, amitriptyline or carbamazepine.
Living with multiple sclerosis can cause stress to joints and muscles, which then causes pain.
Physiotherapists are often used to suggest exercises or advice on seating positions to improve pain.
In severe cases, patients are given painkillers. Another treatment often used is a TENS machine. This stands for transcutaneous electrical nerve stimulation.
Problems with cognition, learning and memory
If a patient has problems with memory and thinking, they might be referred to an occupational therapist or neuropsychologist. These will assess problems and suggest management techniques.
It is not uncommon for people to experience emotional outbursts with MS. When people find themselves crying or laughing for no reason, they should seek an assessment with a clinical psychologist.
Treatment is often with antidepressants or CBT, if appropriate.
If there is worry or anxiety, patients might also be prescribed benzodiazepines, which have a tranquilising effect.
Sometimes with MS, men might find it difficult to maintain (or obtain) an erection. This is called erectile dysfunction. There are medicines that can help increase blood flow to the penis. One such medicine is Viagra (or sildenafil – Viagra is the brand name). This medicine can be prescribed on the NHS for MS sufferers.
Both men and women who have sexual problems with MS can seek help from a sex therapist or relationship counsellor to help with low sex drive or difficulties reaching orgasm.
With MS, you can experience bladder problems. If a patient has an overactive bladder or they need to pee frequently at night, there are medicines that can be prescribed.
There is also support available for people who struggle to empty their bladder or who experience continence issues. Sometimes a catheter is needed, but this is rarely for a long time.
Mild or moderate constipation caused by MS can often be treated with changes to the diet or with laxatives. In severe cases, suppositories (medicines inserted into the rectum) or an enema might be used. This involves a liquid medication being rinsed through the large bowel to soften and flush out stools.
If bowel incontinence occurs, this can often be treated with loperamide – an anti-diarrhoea medication. Doing pelvic floor exercises can also strengthen the muscles of the rectum.
Swallowing and speech difficulties
A speech and language therapist (SLT) can help patients find ways to improve their swallowing and speech problems.
One way they help is by advising on foods that are more easily swallowed. They can also recommend strengthening exercises to stimulate the muscles used in swallowing and speech.
If swallowing issues are severe, some patients need to be tube-fed. In these cases, a tube is fitted through the skin to the stomach.
Disease modifying therapies (DMTs)
Though there is no cure for MS, disease modifying therapies mean that people can experience fewer symptoms and their relapses aren’t as severe. This therapy can be taken as an infusion, injection or pill.
Final thoughts on MS
Though MS is a life-long condition, it isn’t terminal. Modern advancements and treatments now mean that people with MS live more fulfilling lives than ever before. What’s more, researchers are working hard to understand MS more and, with time, there is hope for a cure.