How multiple sclerosis affects lives

Golriz Ghahraman spoke bravely and eloquently about her diagnosis of multiple sclerosis.

Green MP and former human rights lawyer Golriz Ghahraman recently spoke bravely and eloquently about her diagnosis of multiple sclerosis (MS). She has been living with MS for two years and felt it was time to talk about her experience, in the hope that she could reduce some of the stigma for others.

We don’t yet fully understand MS, though hopefully this will change as more research is undertaken around the world.

We don’t yet know, for example, what causes it, or why some people will get it but others won’t, nor can we predict how it will progress in different people.

Thankfully though, the condition has a much better prognosis or outlook now than it used to. Many patients with MS live long and full lives, in spite of the diagnosis.

Some of the facts about MS

It is a chronic disease (this means it is ongoing, not just a ‘‘one-off’’ event) that affects the neurological or nervous system. Although many of the symptoms of MS can be effectively managed, there is no cure for it.

MS affects the central nervous system (the brain, spinal cord and optic nerves, known as the CNS).

The CNS controls all our conscious and unconscious bodily functions. It can control different parts of our body (such as our muscles) by sending electrical impulses from the brain carrying specific instructions.

These impulses or messages are sent via nerve fibres, that are coated in a myelin sheath. This sheath is much like the insulation or coating on an electric cable and its role is to speed up the transmission of these messages, and also to protect one nerve fibre from another.

During an ‘‘attack’’ of MS, patches of the CNS will get inflamed – this causes the symptoms associated with a relapse, and can lead to permanent damage of the myelin sheath (known as demyelination), or even the nerve fibre itself, seen after a relapse as areas of scarring or sclerosis.

These lesions or patches of scarring can be scattered throughout the CNS, and where they are located will define what type of symptoms someone experiences.

We know that around 4000 people in New Zealand have MS, so it affects around one in 1000 of us. We also know that it is much more common in women than men (around three times the rate), and that symptoms usually appear between 20 and 50 years of age. Interestingly, we also know that it is more common the further you get from the equator, so the South Island has a higher prevalence than the North Island. It is more common in Europeans, and there is a slightly higher risk if you have a family member affected, so there is a genetic component as well.

While we don’t yet truly understand the causes of MS, it is very likely that it is an autoimmune condition – this means that for some reason (perhaps in response to a simple viral infection years earlier) the body starts to attack its own cells, in this case the myelin sheath covering the nerves, leading to inflammation and then scarring.

The symptoms of MS depend on what part of the central nervous system has been affected. They can affect:

■ Vision – many people, as was the case for Ghahraman, will first present with a sudden loss or deterioration of their vision, typically in one eye. MS can also cause pain in the eyes, double vision, and weakness of muscles that control eye movement.

■ Hearing and balance – MS can affect hearing, but can also cause vertigo, nausea, dizziness and unsteadiness (known as ataxia) depending on what part of the hearing or balance system is involved.

■ Limbs – weakness, paralysis and loss of sensation is common, and can range from mild to really severe and disabling. Some sufferers in extreme cases will eventually be bedbound.

■ Face – weakness of some of the facial muscles can occur, as can abnormal or altered sensations in the face, known as paraesthesias.

■ Bladder, bowels and sexual function – controlled by the autonomic nervous system, MS can affect these bodily functions too, leading to problems passing urine, maintaining continence, having regular bowel motions, or impotence. Involvement of the autonomic nervous system can also affect our ability to sweat and regulate our body temperature.

■ Psychological and intellectual impairment – again, the effects of this will vary hugely from individual to individual, but people with MS are prone to depression (as are many others with chronic impacting health conditions), and in some cases it can ultimately affect attention, concentration and even memory.

The progression of MS is variable, and impossible to predict accurately at the outset. The majority of people will start out with what is known as ‘‘relapsing and remitting’’ disease – this means they will have episodes or flares when their symptoms are more severe, then things will settle down.

Unfortunately what tends to happen is that at the end of each flare the ‘‘baseline’’ is a little lower, so overall there is a gradual deterioration. Eventually most people with relapsing-remitting MS will go on to have a more progressive form of the disease, with fewer and fewer periods of remission as time goes by. A much smaller number (about 10 per cent) will have progressive disease from the outset, and sadly for them the outlook can be much bleaker.

It is important to note that most people with MS will live just as long as those who don’t have MS, and the majority will lead full, independent lives.

Diagnosing MS is usually done by a neurologist. It is largely a clinical diagnosis, which means that the pattern of symptoms and findings on clinical examination are important.

Once MS is suspected, it can be confirmed by a variety of tests, including MRI scans, lumbar punctures to look at samples of spinal fluid, and electrical studies of nerves. Not all of these will be required for each person, depending on the clinical picture.

There are some great treatment options available now for MS, many of which (though not all) are available fully funded in New Zealand. These drugs aim to modify the course of the disease, rather than cure it completely, but if successful they can enable those with MS to lead full, active lives for much longer than they would otherwise.

Although the future for people with MS is much brighter than it used to be, I am sure that the diagnosis will never be an easy one to hear.

As Ghahraman says, ‘‘I thought, no, oh. . . not me’’ and she describes it as one of her ‘‘biggest challenges’’ and ‘‘an incredible learning opportunity’’.

Thankfully, there is good support available, and I’d recommend anyone in this situation gets in touch with Multiple Sclerosis New Zealand, which can direct you to a wealth of amazing resources for you and your loved ones, as well as local support groups, whose members will be able to talk through what you might need.