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What is multiple sclerosis? What causes MS? What are its symptoms? What are the treatments? How can psychology help or hinder MS? How do people deal with MS?
Multiple sclerosis is a disease of the central nervous system; specifically, the myelin of the brain and the spinal cord are attacked by the immune system. Myelin is the insulating layer around each nerve fibre.
When the myelin is damaged, the smooth transmission of signals is impaired and causes a wide range of highly unpredictable symptoms. MS, the common abbreviation, is just one of several immune-mediated, demyelinating diseases.
Take a moment to imagine what that is like; any muscle, any nerve, anywhere in your body can suddenly stop functioning properly, and there is nothing you did to cause it and nothing you can do to cure it.
Imagine the anxiety, the sense of helplessness, the powerlessness, the loss of control, the uncertainty of whether you will be able to function tomorrow or ever again. Yet, with incredible resilience, many people living with MS gradually develop successful coping strategies.
MS, in most cases, starts as a mystery problem, for example, tingling in the legs, an unexpected fall in an otherwise healthy person, or disturbances of vision.
The list of first symptoms is extensive, given that MS is so inconsistent and can interfere with any bodily function controlled by the central nervous system. That creates problems in diagnosing MS.
Most people who are eventually found to have MS experience a long list of widely varying mystery symptoms and repeated visits to various physicians over 18 months before they are diagnosed.
When they report their symptoms, some people do not believe them; they are dismissed as hypochondriacs or suffering from psychosomatic illness.
Imagine how that feels; you know your symptoms are real, you are rightly worried, and then you are dismissed as neurotic, or worse, side-lined by health carers who are worked to exhaustion.
Since many people have had health concerns that are later confirmed to be unfounded and had health problems triggered by mental or emotional states, many people with mystery symptoms accept the view of the overworked physicians until their next capricious symptoms appear.
Alas, for most people, an MS diagnosis is reached by ruling out all other possibilities. Put yourself in that situation: you are being tested regularly to determine whether you have one horrible disease after another, being traumatised by the uncertainty of what life-changing results will come back.
Eventually, one day, the life-changing diagnosis of MS is given. Then there is the further uncertainty of what kind of MS? What will it do to you? What life will you have? How long have you got?
Four types of multiple sclerosis
Perhaps the word ‘types’ is not quite right since we don’t understand the causes of MS, and as such, types imply knowledge we do not have. The phrase more accurately used is disease course.
Clinically Isolated Syndrome
That is where a person suffers inflammation and demyelination of a part of the central nervous system. If an MRI scan reveals brain lesions with MS characteristics, that person has a higher possibility of going on to receive an MS diagnosis than someone who has no or few lesions in the brain.
Take a moment to consider the psychological impact of losing the use of your right leg for reasons unknown, and then full functioning is restored a day later. What would that do to your confidence? To your optimism for the future?
One of the most difficult to deal with aspects of MS is the unknown, the loss of control, and the inability to trust your body. If we want to learn how to deal with uncertainty, people with MS can give us good advice.
Relapsing-Remitting MS (RRMS)
It accounts for around 80%+ cases. The RRMS course consists of intermittent attacks or relapses and periods of remission, which can appear as full or partial recovery. The duration and severity of attacks and the period and level of recovery vary for each person and from person to person.
Secondary Progressive MS (SPMS)
Some people on the RRMS course experience deterioration to the point where the SPMS course seems more prominent. SPMS has most of the same characteristics as RRMS, with the main difference being the progressive accumulation of disability. There are periods where there appears to be no progression in the disease.
Primary Progressive MS (PPMS)
On the PPMS course, there is intermittent deterioration from the time of the first symptoms. There are periods with progression and without progression. The disease is stable, and for a time, there is no further deterioration, and then further deterioration occurs. Around 15% of people with MS experience the Primary Progressive course.
Globally, there are approximately 2,300,000 people who are diagnosed with MS. The actual number living with MS is probably much higher than that because of the time it takes to confirm MS, the lack of health assessment facilities in many parts of the world, and the stoicism of some people who decide to cope with whatever ails them for many years before eventual diagnosis.
Only 4–5% of MS cases are in children for reasons unknown. Also unknown is why the incidence of MS is greater in places far from the equator (north or south), and the MS rate is highest in Caucasians and lower in all other races. That elevated rate for Caucasians is true wherever they live, even if on the equator.
Whatever causes MS seems to have a gender component; around 65 to 75% of cases are in females. Genetics seems to play a minor role; it is estimated that genes play a role in only 15% of cases (where a close relative has MS).
What causes MS is unknown. Let’s take a moment to dissect that statement: ‘What causes MS is unknown.’ That is not strictly accurate. We know MS is caused by the immune system attacking the myelin sheaths of the body’s nervous system.
The better question is: what causes the immune system to attack the myelin? Why does the immune system suddenly start seeing myelin as a threat? Has there been a change in the immune system? If so, what causes it to change? Has there been a change in the myelin? If so, what causes it to change? Or is there some mediating variable?
Could it be that neither the immune system nor the myelin has changed, but some unknown other variable has changed so that the myelin is seen as a threat? Has something ‘trained’ the immune system to see myelin as a threat? If so, what is the ‘training’ agent? Could it be viral, bacterial, a genetic change, or an external chemical? (The list of suspects is long.)
Therein lie the core questions in almost all MS research. Answering those questions will enable researchers to work on a cure or cures and effective treatment for MS. Currently, there is no known effective cure. There are many ameliorative treatments, sometimes known as disease-modifying therapies.
Everyone in life faces challenges. For some people, it is MS. Whatever we have to deal with, life is improved IF we choose to make the best of it.
Here are some examples of empowered approaches to living with MS by people reported to have MS.
- Art Alexakis is reported to have inspired millions by saying, I am just learning how to be the new me.
- Montel Williams seeks to keep it in a box.
- Jamie-Lynn Sigler: It’s part of me, but it’s not who I am.
- Jack Osborne: Adapt and overcome is my new motto.
- Trevor Bayne: I’m committed to taking the best care of my body possible.
- Alan Osmond: I have MS, but MS does not have me.
- Noah Shebib: I’m going to live with it. I’m going to win with it.
- Richard Pryor, perhaps one of the funniest comedians and comedy actors ever, starred in many films and TV shows after being diagnosed with MS.
The most striking thing about the psychology of dealing with MS is just how resilient and resourceful people can be. Most people with MS choose to make the best of it, to live life as well as they can.
Yes, getting MS is tough, but not nearly as tough as the human spirit in those who choose to thrive in the face of adversity.
Professor Nigel MacLennan runs the performance coaching practice PsyPerform.