Multiple Sclerosis (MS): The Hidden Disease
Multiple sclerosis is a lifelong autoimmune disease affecting the brain, spinal cord and the optic nerves in your eyes. Symptoms are variable and unpredictable, often changing or fluctuating with progression. As the immune system attacks the central nervous system, symptoms worsen over a period of time. Depending on its severity, MS can be extremely debilitating. Affecting over 100,000 people in the UK, it is now recognised as the most common disabling neurological disease in young adults.
The condition is more prevalent in women, with almost three times as many women diagnosed as men. They also experience specific symptoms that do not affect men due to the impact of female sex hormones. The hormonal changes women with MS experience can adversely impact contraception, menstruation, pregnancy and menopause.
In order to understand the effect of MS, it’s important to know how the central nervous system works. The nerve fibres in the central nervous system are protected by a substance called myelin, which ensures that messages move quickly and smoothly between the brain and the rest of the body. For those people who suffer with MS, their immune system mistakes myelin for a foreign body and attacks it. As a result, the myelin is stripped from the nerve fibres, leaving lesions or plaques which ultimately disrupts messages travelling along these fibres, resulting in the messages slowing down, becoming distorted or not getting through at all. Unfortunately, with the loss of myelin there will be damage to the actual nerve fibres, and it is this damage that can result in an increase in disability over time.
To date, researchers have not found the exact cause of what triggers the immune system to see myelin as a foreign body, however, it is thought to be a combination of environmental and genetic factors which include:
- Infections – Even though exposure to viruses such as the human herpes virus type 6 (HHV6), mycoplasma (Pneumonia) and the Epstein-Barr virus (EBV) may increase a person’s risk of developing MS, there isn’t a definite link.
- Vitamin B12 deficiency – In order to produce myelin, the body uses vitamin B and it is thought a lack of this vitamin may increase the risk of developing MS and other neurological diseases.
- Vitamin D deficiency – People who have less exposure to bright sunshine may have low levels of vitamin D, which may affect the immune system. As a result, MS is more common in those people who are not exposed to sufficient levels of sunshine.
- Smoking – People who smoke are more at risk of developing MS as they tend to have more brain lesions than non-smokers.
- Genetic – Even though MS may be genetic, it is thought that an environmental trigger is also necessary in order for MS to develop.
- Age – MS is usually diagnosed between the ages of 20 and 40 years.
- Sex – MS is three times more likely to affect women than men.
Even though some people diagnosed may feel healthy for a number of years, others may become extremely debilitated very quickly. As a result, the course of MS is unpredictable, however, it is normal for the majority of people diagnosed to fit somewhere between these two extremes. There are four types of MS incorporating a number of distinct patterns which relate to the course of the disease and its effects on the body over a period of time.
- Relapsing-remitting MS (RRMS) – The most common form of MS with approximately 85% of people with MS initially diagnosed with RRMS. This disease course is characterised by clearly defined attacks of new or increased neurological symptoms. These relapses or exacerbations are then followed by periods of partial or complete recovery (remissions). During this time there is no apparent progression of the disease, although at times RRMS can be active (with relapses) or not active, worsening or not worsening.
- Secondary-progressive MS (SPMS) – This is normally the next stage of the disease for people who have RRMS. It does not have the variations in symptoms which occur in RRMS but instead has a slow, steady progression with symptoms worsening over time.
- Primary-progressive MS (PPMS) – Accounting for about 10-15 % of all cases, this type of MS is less common. Neurological function is impaired as the disease progresses and slowly worsens with no relapses or remissions.
- Progressive-relapsing MS (PRMS) – This is an extremely rare form of MS accounting for 5% of all cases and is characterised by a steadily worsening disease state from the onset, with symptom flare-ups with or without remissions being present.
Tingling and Numbness
Nerves in the spinal cord and brain are affected by MS, resulting in the sending of conflicting signals around the body. Early warning signs of MS are tingling sensations and numbness, usually experienced in the face, legs, arms and fingers.
Dizziness and Balance
Problems with balance and feeling lightheaded often occur with people who have MS, which results in a decrease in the person’s mobility.
Cognitive impairment is common in 40-65% of people diagnosed with MS and is the result of nerve damage in the brain interrupting the transmission of electrical messages, which reduces the accuracy of the information. Cognitive problems include:
- Memory lapses – Revolving around having difficulty remembering recent events or forgetting to carry out appointments. The use of a notice board, smart phone or diary where information can be recorded will make it easier to remember.
- Language problems – Not being able to recall certain words or phrases is a common problem for people with MS. Describing the word you are struggling with in other terms can make it easier, such as ‘the building with doctors and nurses’, could be a good way of describing a hospital.
- Shortened attention span – People with MS may have difficulty concentrating on conversations, making it harder to follow the thread of a conversation. Reducing distractions before making a phone call can make a difference.
- Problem solving and planning – Known as ‘executive skills’, it can be difficult to manage work or healthcare if they are affected. Before you make important decisions it is helpful if you can talk it over with a family member or close friend.
- Visuospatial abilities – Relating to visual information, and in particular when driving or judging where things are in relation to the space around you, is difficult with MS. Slowing down and concentrating on moving around and using satellite navigation for journeys will make life easier.
Chronic Fatigue and Weakness
Feelings of fatigue and weakness are experienced by at least 80% of people, especially in the early stages of MS. As nerves deteriorate in the spinal cord, feelings of chronic fatigue become more noticeable and can last for weeks before improving. Feeling weak is noticed initially in the legs, making it difficult to cope with mobility and day-to-day living.
Having to cope on a daily basis with the many changes MS can bring causes extreme stress, resulting in mood swings and irritability. Many people experience bouts of uncontrollable laughing and crying as a result of the damage to the central nervous system. Referred to as Pseudobulbar Affect (PBA) or pathological laughing and crying, it is thought to be the result of miscommunication between the cerebral cortex (front of brain) and the cerebellum (back of brain), which has become disrupted by the condition. The brain short circuits, making the control of emotional responses impossible and is known as ‘disinhibition’.
Many people living with MS also suffer with depression as a result of neurological changes and having to deal with the emotional turmoil a diagnosis of MS can bring.
MS can take a toll on relationships as the need to rely on your partner can become stressful, which adds to low self-esteem as the person may feel like a burden. As MS affects how the brain sends signals to nerves in the body, the person may not experience the same responses or sense of touch, making them feel less attractive. MS also affects a person’s desire and sex drive, putting a further strain on relationships.
One of the most common symptoms of MS, visual problems cause inflammation which affects the optic nerve and disrupts central vision, resulting in double vision, blurred vision or loss of vision. The degeneration of clear vision can be a slow process and may not be initially apparent, however, feeling pain when the person looks up or to one side can be an indication and should be checked out immediately.
Not always easy to discuss, in particular if you are a young person, bladder problems occur in approximately 8 out of 10 MS patients. Not being able to fully empty your bladder or urinating frequently makes this condition particularly difficult to cope with. People who cannot urinate at all have to use a self-catheter which takes time to adjust to. It is important to discuss all bladder problems with your GP as soon as possible.
A differential diagnosis is usually performed in order to rule out other conditions that might produce similar signs and symptoms as there are no specific tests for MS. Testing will proceed with a thorough examination and medical history.
In those people who present with relapsing-remitting MS, the diagnosis is usually straightforward, based on various symptoms consistent with the disease. This is then confirmed by a brain imaging scan such as an MRI. However, for those people who have unusual symptoms or a more progressive form of the disease, it can be difficult. In such cases, testing may involve additional imaging and spinal fluid analysis.
There isn’t a cure for MS, however, the symptoms can be managed successfully which will reduce disease activity, enabling you to maintain your quality of life. Managing MS will be an ongoing process with each person’s treatment plan suited to their disease progression and symptoms. Treatment consists of a combination of medication, therapy and exercise. Alternative medicine may also be helpful for those who wish to use it.
Medication takes the form of Disease Modifying Therapies (DMTs) which are a group of treatments tailored to those people with relapsing MS. Their aim is to reduce the number of relapses and the severity of any relapses the person has. Until recently, DMTs did not work for those people who had progressive types of MS, however, a new DMT called Ocrelizumab (Ocrevus) can work on progressive MS if it is diagnosed in the early stages.
Being given a diagnosis of MS is extremely difficult to come to terms with and in order to overcome the fear of the unknown and the anxiety which often accompanies this fear, Talking Therapies will allow you to discuss these problems and help you to understand your feelings. You will then be able to work out ways of taking positive steps towards improving the way you feel, making it less stressful and allowing you to form coping strategies. It can sometimes feel overwhelming when trying to deal with distressing symptoms and therapy can alleviate those feelings of stress, assuring the person they are not alone.
- Counselling – Completely confidential, counselling allows the person to discuss how they are feeling in an atmosphere of trust and empathy.
- Cognitive Behavioural Therapy – Focusing on practical problem-solving techniques and helping the person to overcome those barriers which make it difficult to move forward.
- Psychotherapy – Helping the person to understand fully why they feel a certain way.
Many people with MS avoid exercise as they think it may aggravate their condition or increase their fatigue. However, research has shown that moderate physical exercise can actually improve the symptoms of MS, making you feel fitter, stronger and increasing your endurance. Exercise can also help you to have better control over your bowel and bladder function, lessen fatigue and improve mood. It’s also important to discuss the use of exercise as part of your treatment plan with your doctor before beginning. Exercises which have the best outcome for MS are:
- Aerobic exercise – This can involve any activity which increases your heart rate, such as swimming, jogging or walking. Remember to go at a moderate pace for at least one hour per week. If you have not exercised before, please ensure you stretch before starting this form of activity.
- Yoga – A stretching exercise such as yoga is the best way to maintain your range of motion and will also ease symptoms of muscle stiffness or tightness which MS can produce. It is recommended to stretch for at least 10 minutes per day in order to achieve results.
- Resistance training – The use of machines or weights will help in maintaining and improving muscle strength. It’s important to warm up by stretching before training and this form of exercise should be done at least twice a week.
- Swimming/Cycling – Taken in moderation, swimming and cycling can be beneficial for muscle stiffness and building stamina and increasing heart rate.
It’s important to discuss the use of alternative/complementary therapy with your doctor as most alternative treatments are used in conjunction with a medical treatment plan which may be affected. It is also important to discuss the particular therapy you want to try and the side effects (if any). The following alternative/complementary therapies may have the best outcome for MS:
Even though there are no scientific studies to confirm the benefits of acupuncture for MS, some people with the condition report that acupuncture does provide relief for certain symptoms such as muscle spasms, bladder control and pain. It is important to carry out research and ensure that the acupuncturist is registered and certified.
Even though massage will not change the course of the condition, regular massage will help relax the muscles, reduce stress and depression, which can exacerbate the condition. Please discuss this form of therapy with your doctor as people with MS may have osteoporosis as a result of their treatments, and in this case massage would not be recommended.
Evening Primrose Oil (linoleic acid)
Found in sunflower seeds and sunflower oil, there is some evidence that taking an oral supplement of Evening Primrose Oil may improve the symptoms of MS.
It is important for those people with MS to maintain a healthy, balanced diet which includes the major food groups such as:
- Proteins – which help growth and tissue repair
- Carbohydrates – provide energy
- Fats – providing essential fatty acids and aids the absorption of vitamins
- Vitamins and minerals – essential for different cell processes
- Fibre – aids healthy digestion
- Water and fluids – transports nutrients to every cell in the body
Foods which are high in saturated fat such as butter, cheese, red meat and full-fat dairy products should be avoided. Alcohol and caffeine should be used in moderation.
This often hidden illness is as mysterious as it is debilitating, affecting the central nervous system and resulting in damage in the brain and spinal cord. There is no cure for MS, and this autoimmune disease, which is more prevalent in women than men, may result in debilitating symptoms which impact every aspect of the person’s life.
It takes remarkable strength, determination, courage and optimism to overcome the obstacles that MS sufferers have to endure. Research is ongoing in this field and hopefully there will come a day when those who suffer with this illness will be able to say, “I used to have MS”.
- Multiple sclerosis - NHS
Multiple sclerosis (MS) is a condition that can affect the brain and spinal cord, causing a wide range of potential symptoms, including problems with vision, arm or leg movement, sensation or balance.
- Simple exercises for MS | Multiple Sclerosis Society UK
Symptoms of multiple sclerosis can make it hard to exercise. So we've worked with personal trainer Dom to create a range of exercises for people with MS. These workouts are designed for different levels of mobility.
- National Multiple Sclerosis Society
The National MS Society is united in our collective power to do something about MS now and end this disease forever.
This content is for informational purposes only and does not substitute for formal and individualized diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed medical professional. Do not stop or alter your current course of treatment. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
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© 2019 Lorna Lamon