MS: A Deeper Dive
MS: A Deeper Dive
MS: A Deeper Dive, provides an overview of the disease, with scientific and medical expressions explained in simple terms.
What is Multiple Sclerosis?
Multiple sclerosis, or MS is a neurodegenerative disease, which means that the brain will become more affected over time. It’s characterised by damaged areas (lesions) on the brain and spinal cord. MS causes, among other things, muscle spasms, and problems with thinking, learning, and mobility.
What causes Multiple Sclerosis?
MS has a genetic susceptibility, but it is not directly inherited.
It is estimated that 8.5% of the population is ‘genetically susceptible’ to multiple sclerosis, and people in this category are 12 times more likely to develop MS than the rest. As a result, 84% of all MS cases come from this genetically susceptible group.
MS is known to affect more women than men, but there is no evidence to suggest that there are more women than men in the genetically susceptible group.
This suggests that women are more likely to respond to the environmental factors that may trigger MS.
Research is ongoing, but if breakthroughs are made, this line of thought could lead to the identification of a root cause, which might lead to effective prevention in the future.
An autoimmune disorder
Multiple sclerosis is classified as an autoimmune disorder. Autoimmune disorders happen when the immune system malfunctions and begins to attack the body’s own tissues and organs.
This sounds simple, but the reality is that somewhere in the incredibly complex interactions that happen within the immune system, one element is misbehaving.
In very simple terms, the immune system works when cells react to one another. The way cells react is called a signalling cascade:
- Cells have minute receptors on their surface
- These specific receptors join to specific cells
- When they join, it causes a change in the cell itself
- This creates cytokines, proteins or other cells
- Those new cytokines, proteins or cells travel off to join with other cell receptors
And so the process continues. After several rounds of cellular change and evolution, an immunological response may occur:
- New cytokines, proteins or cells bind with unfriendly cells and neutralise them
Each cell is specific, each receptor is specific, the cytokines, proteins or cells produced are specific, and they all bind to different, specific cell receptors.
This will normally serve to fight off an infection. However, occasionally this complex cascade goes wrong and the resulting cells start to attack and neutralise the wrong cells, cells that we need.
In MS, the tissues being attacked are in the myelin sheath.
The myelin sheath
The myelin sheath is basically an electrical insulator, protecting the nerve pathways in the central nervous system. Nerve signals are electrical messages that are passed to your brain. The central nervous system is the name given to the network of pathways along which the electrical messages travel, and these pathways run throughout the body.
Myelin is a protective fatty substance, which allows nerve signals to travel 20 times faster than they otherwise would. In areas where the myelin sheath is thick, those signals can travel as fast as 250 miles per hour, which is necessary when your body is reacting to something dangerous, like needing to pull your hand away from something incredibly hot.
In MS patients, the myelin around some nerves breaks down, so the nerves carry electrical signals between the brain and body at a much slower speed.
MS affects both the central nervous system and brain function. More recent studies are focusing on the brain degeneration aspects of the disease, which causes clinical disability in patients and is only partly treatable with immunomodulatory therapies; treatments designed to even-out the problems with the immune system that cause damage to the myelin sheath.
Mitochondria are found in large numbers in most cells. They are where biochemical processes around respiration and energy production occur. This means that they turn sugars, fats and proteins into chemical energy that the body can use. This is called chemical respiration.
When multiple sclerosis progresses, the mitochondria can begin to malfunction; they no longer respire normally.
When mitochondria become dysfunctional, they produce reactive oxygen species. If these build up, they can cause damage, which causes inflammation. This shifts the mitochondria from respiration to fission, which means cell division.
In the parts of the brain affected by multiple sclerosis, fission causes the number of mitochondria in each cell to increase. This means that where neurons are being exposed because the myelin sheath is being attacked, dysfunctional mitochondria speed-up the rate at which nerve cells are damaged.
This is called axonal degeneration.
The specific signals that cause the mitochondria to malfunction are largely unknown.
Immunobiology is one of the most complex areas of research, simply because the way cells interact is changing all the time. Research in this field moves fast, so staying on top of it all is very demanding.
Because the signaling cascade that causes MS is so complex, identifying the specific cell or receptor behaviour that’s causing the trouble is incredibly challenging.
A brief history of Multiple Sclerosis
- Drawings of autopsies from 1838 show what we now recognise to be multiple sclerosis.
- In 1868, Jean-Martin Charcot examined a woman with the symptoms of MS, and after her death identified the plaques and scarring in her brain that are characteristic of the disease.
- In 1873, multiple sclerosis was recognised by Dr Walter Moxon.
- In 1916, Dr James Dawson identified the inflammation around blood vessels and damage to the myelin sheath.
- In 1935 Dr Thomas Rivers proved that MS is not a viral disease that attacks the immune system.
- In 1943 researchers identified the composition of myelin.
- In 1946, Sylvia Lawry founded the MS Society, which has since raised millions for research into multiple sclerosis.
- In 1953, Francis Crick and James Watson described the structure of DNA, which led to the study of how genes control biological functions and how gene sequences regulate the immune system.
- In the 1960s research discovers that MS is an autoimmune disease.
- The first CAT scans were performed on MS patients in 1978.
- Clinical drug trials were carried out throughout the 1980s and new drug treatments became available in the 1990s.
- Now – research continues and treatments are still evolving.
Founded by Sylvia Lawry in 1946, the MS Society works hard to fund research and to provide support for people living with MS.
You can contact their helpline any time between 9am and 7pm Monday – Friday.
0808 800 8000
You can also download their free e-booklet: For family and friends: when someone close to you has MS.
The types of multiple sclerosis
There are 2 general types of multiple sclerosis:
This affects 80% of MS patients, who will experience episodes of new or increased symptoms commonly referred to as ‘relapses’. These can last for a few days, a few weeks or a few months, then slowly improve over a similar time period.
There can be no cause for a relapse, or they can be brought on by illness or stress. The symptoms may clear completely of their own accord, although some continue. The time between attacks is called ‘remission’.
Relapsing-remitting MS can, after years (decades), develop into progressive MS.
10% of MS patients begin with a slow and steady worsening of symptoms. There are no periods of remission, but symptoms may stabilise for a time before continuing to degenerate.
If you are caring for someone with MS, the HomeTouch team can help. We can provide you with advice and support, and help you to find a top quality carer in your local area.
Just call 020 7148 0746.
The signs and symptoms
The symptoms of multiple sclerosis are varied, can affect any part of the body, and the effect on every patient is different.
For some, the symptoms develop and get more pronounced over time, and for others the symptoms come and go. Two terms that are often used are:
- Relapse – when symptoms that have abated for a time, come back.
- Remission – When symptoms that have been bad, improve or clear.
The most common symptoms include:
- Problems with sight
- Trouble with balance and dizziness
- Numbness and tingling
- Muscle spasms, stiffness and weakness
- Problems when thinking or planning
- Sexual problems
- Bladder problems
- Bowel problems
- Problems with speech and swallowing
Fatigue is an ‘invisible symptom’ of multiple sclerosis. It comes as a sudden loss of energy that prevents the patient from being able to continue an activity. It can be either or both mental and physical. It cannot be ‘worked through’, and the recovery time can be long.
It’s difficult for family, friends or colleagues to understand fatigue and how debilitating it can be. The most common assumption is that the patient simply isn’t ‘trying hard enough’. Understandably it’s the most common reason for MS patients to reduce their working hours or give up working entirely.
Problems with sight
As multiple sclerosis affects the nervous system, it’s not surprising that it should affect the optic nerve, which connects the eye to the brain. 20% of MS patients experience a problem with one of their eyes. It can be temporary loss of vision, colour blindness, flashes of light and blind spots with otherwise good vision. This often causes pain, especially when moving the eyes.
Trouble with balance and dizziness
Roughly speaking there are 3 parts to the balance system, and all rely on swift electrical transmission of information about the outer environment, to the brain. When the pathways that carry these signals are interrupted, the physical effects can be destabilising. To balance we need:
- Effective sight to communicate information about the environment
- A stable inner ear to update the brain on the angle of the head
- Clear senses to communicate where the various parts of the body are
Incidentally, successfully marrying these three elements is a constant challenge to the Virtual Reality industry. When the eyes are communicating movements like running and jumping, and the ears are sensing a rotating and tilting head, and the body is communicating no movement whatsoever, the effect can be nausea-inducing to even the strongest stomach. This sensation is not dissimilar to the sensation experienced by some MS patients.
Multiple sclerosis can also cause tremors, muscle weakness, and stiffness or spasms in the limbs, which can all add to difficulties in balance.
Numbness and tingling
Numbness and tingling can affect any part of the body, but commonly affects the face, arms and legs. This is one of the most common symptoms of MS, and often the first symptom that raises alarm. The numbness can be slight, or it can be so severe that it has an effect on carrying out everyday activities.
- If feet are numb or tingling, then walking can be difficult
- If hands are numb then holding objects can be difficult, if not dangerous, especially items such as a hot cup of tea
- If the face is numb, then eating without biting the inside of the mouth or tongue can be difficult
Most cases of numbness and tingling wear off on their own.
Problems with thinking and planning
Cognitive problems affect about 50% of people with MS, and those patients will experience some problems with memory, attention span, planning, decision making, and understanding. These problems are more likely to arise the longer the condition persists.
These symptoms are easy to dismiss as related to stress, overwork, tiredness, or the ageing process. The most common description given for these cognitive problems is ‘brain fog’, or ‘fuzziness’. As these symptoms usually get progressively worse, it is possible to come up with ways to cope with them on a daily basis.
MS can cause complications with sexual responses and relationships.
Mechanically, orgasms require messages to be sent through the nervous system between the brain and the sexual organs, and if there’s nerve damage in the pathways involved, then this can cause simple functional barriers.
Less mechanically, living with a condition, especially one where the ongoing symptoms can be hard to understand, can create a barrier between two people.
The worry and stress that can come from facing a long-term condition coupled with the grief of adjusting to the new reality can affect sexual desire.
The bladder works when the senses communicate with the brain that the bladder is getting full. This warning usually allows time for getting to a toilet. Once there, the muscles in the bladder need to coordinate; one relaxes while the other contracts.
There are two problems that can face people with MS:
When nerve pathways are interrupted, even a small amount of urine in the bladder can cause it to contract, which can cause what’s called ‘frequency’; the need to visit the bathroom on a very regular basis. Then the inability to coordinate the bladder muscles can affect the ability to ‘hold on’, which causes ‘urgency’.
If the problems are to do with emptying, then the difficulty lies in interrupted flow and an inability to empty completely, leading to a need to revisit the bathroom sooner.
These can be a source of great discomfort and embarrassment for MS patients. The two extremes are constipation and diarrhoea.
Constipation can be caused by:
- Reduced fluid intake
- Reduced physical activity
- The side effects of certain medications
Regularity can be maintained by:
- Keeping fluid levels high
- Eating plenty of fibre; fresh fruit and vegetables and whole grains
- Physical activity
Problems with speech and swallowing
Just like the bowel, swallowing relies on a series of muscle contractions, and the successful execution of this can be interrupted by damaged neural pathways. In MS, this specific problem is called dysphagia. Dysphagia commonly affects both speech and swallowing.
Problems with swallowing can cause coughing or choking when eating, and the feeling that something is lodged in the throat.
Challenges with speaking can cause speech patterns to be disrupted by long pauses and slurring.
Although multiple sclerosis is the most common, other conditions can affect the myelin sheath. A diagnosis of MS, therefore requires first ruling out the possibility of:
- A viral infection – a virus can cause the development of disease-fighting cells with receptors for both viral and nerve proteins
- Side effects from toxic materials which can have an impact on the biochemistry of myelin:
- Lead – an environmental pollutant
- Lysolecithin – a toxin used in food, feed, pharmaceutical and cosmetic applications
- Organotin – a toxin found in tin compounds also used in fungicides, plastics, rodent repellents
- Hexachlorophene – a chlorinated antiseptic used in soaps and creams
- Tellurium – a toxic element used in metal alloys, glass and ceramic tinting, solar cells, oil refining, and in rewritable CDs and DVDs
- Vitamin B12 deficiency – which can cause pins and needles, changes in walking and movement, vision impairments, decline in mental abilities
- Other autoimmune conditions
- Hereditary disorders – that may cause the same symptoms
Some conditions that reduce the myelin sheath are limited, while others may progress. Thorough and repeated examinations may be needed to come to an exact diagnosis or to confirm the presence of a specific cause.
As is the case with many neurological conditions (see Parkinson’s: a deeper dive) there are currently no singular symptoms, findings or tests that can definitively confirm the presence of multiple sclerosis. For this reason, multiple strategies are adopted to determine if a person meets the criteria for MS. These include:
- Medical history
- Neurological examination – assessment of sensory and motor responses, especially reflexes
- MRI scan
- EPs or Evoked Potentials – these tests are used to detect slowing of neurological responses, and there are 3 different types:
- Visual Evoked Potentials – the patient sits in front of a screen and looks at changing checkerboard patterns
- Brainstem Auditory Evoked Potentials – the patient listens to a series of clicks in each ear
- Sensory Evoked Potentials – electrical impulses applied to an arm or leg
- Spinal fluid analysis – measurement of chemicals in the fluid surrounding the brain and spinal cord
These will reveal evidence, which taken as a whole may enable a diagnosis. This evidence must include:
- Damage in 2 or more separate areas of the central nervous system
- Evidence that the damage occurred to both areas more than 1 month apart
- Negative diagnosis for all other possible causes
Medications are used to change the course of the disease and manage symptoms, but there is, as yet, no cure.
Treatment for relapses in symptoms
- A 5 day course of steroid tablets
- Steroid injections given in hospital for 3-5 days
Steroids can cause osteoporosis, weight gain, and diabetes, so long-term use is avoided.
Disease modifying therapies
- Beta interferons – given by injection for relapsing and progressive MS. These can cause headaches, chills and mild fever.
- Glatiramer acetate – Copaxone – given by injection every day or 3 times a week for relapsing and active MS. Can cause redness of the skin and palpitations.
- Teriflunomide – Aubagio – a tablet taken once daily for relapsing and active MS. Can cause nausea, diarrhoea, hair thinning, problems with liver function.
- Natalizumab – Tysabri – intravenous injection every 28 days for severe MS that’s getting worse quickly. Side effects are rare, but can include itch or rash, headaches, dizziness, joint pain, nausea.
- Fingolimod – Gilenya – a capsule taken once daily for relapsing MS, if your relapses haven’t responded to other medications like beta interferons. Sometimes causes headaches, diarrhoea, liver and visual problems.
- Alemtuzumab – Lemtrada or Genzyme – a 2-course intravenous treatment starting once a day for 5 days, then followed-up a year later for 3 days. Used for relapsing and active MS, it may cause headaches, rashes and fever.
- Dimethyl fumarate – Tecfidera – tablet taken twice daily for relapsing and/or active MS. Can cause hot flushes, diarrhoea, nausea, abdominal pain, headaches.
Read more information about the therapies and medications available, see Multiple Sclerosis Treatment.
A comorbidity is a separate medical problem that is directly caused by an original disease or condition. The most common comorbidities are depression and anxiety, and as these can have a serious impact on quality of life, and can lead to loss of interest in maintaining treatment regimes, it is very important that they are treated.
Multiple sclerosis can also cause bowel disease, epilepsy and bipolar disorder.
There is a suggestion that women with MS are more likely to develop chronic lung disease, while men are more likely to suffer from hypertension, diabetes, epilepsy, depression, anxiety, bipolar disorder and schizophrenia.
How does multiple sclerosis affect life?
Multiple sclerosis is normally diagnosed during a person’s 20s and 30s, and it can reduce life expectancy by 5 to 10 years, although this gap is being reduced year on year. It’s a lifelong condition and it can cause disability, but it can also be mild. As a result the impact of multiple sclerosis can vary.
MS can be challenging to live with, for all involved. But new treatments have significantly improved quality of life for people with the condition. It’s rarely fatal, but it can cause other complications and illnesses that can be problematic.
If MS advances, it can be debilitating. Serious impact on movement, and physical and mental stability, can eventually lead to a constant need for care.
Read more about caring for someone with MS.
Caring for someone with MS
If you are caring for someone with MS, HomeTouch can help. Simply search by postcode and browse the profiles of self-employed carers near you. All of the carers on our site have gone through a thorough 42-point vetting process, and only 5% are accepted. You choose the carer you want to work with, and we provide support with contracts, payments, and holiday and sickness cover.
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