Tuesday, January 16, 2007

Pragmatic approach to MS

The Dominion Post | Tuesday, 16 January 2007

Some multiple sclerosis sufferers will only ever experience mild symptoms over their lifetime while others experience slowly worsening disability over many months or years. Kelly Andrew talks to Helen Roddick, who has been living with the disorder for 14 years.

Helen Roddick's father, a GP, wept in the neurology ward at Christchurch Hospital when he found out she had multiple sclerosis. Helen, then aged 24 and in her final year of nursing training, took a more pragmatic approach to her diagnosis. She hauled out her textbooks to look up the disease and find out exactly what she was dealing with. The symptoms listed - including visual and sensory disturbances - mirrored what she experienced in her first attack.

"I started feeling dizzy at work and then I vomited continuously. I went to bed and my vision went double so I went to emergency at the hospital."

Helen was referred to a neurologist by her GP after she left hospital. Tests, including a lumbar puncture and blood tests, confirmed the MS diagnosis within a week. Helen's father recognised the symptoms and had already quietly suspected that she had the neurological disease.

She is one of up to 4000 New Zealanders with MS - the exact number is unknown till a new nationwide study of its prevalency is completed later this year. The disease attacks the central nervous system, damaging the protective sheath that covers nerves and disrupting signals from the brain. The name refers to multiple areas of scarring (sclerosis) in the brain and spinal cord. At present there is no cure but drugs such as glatiramer and beta interferon can slow its progression and muscle relaxants can help control some of the symptoms.

The course of MS varies widely from person to person - some people will only ever experience mild symptoms over their lifetime while others experience slowly worsening disability over many months or years.
Now 38, Helen has been living with the disorder for 14 years. It has gradually worsened, but she says she is used to living with a disease she describes as "strange".

The symptoms strike suddenly and then ebb away only to return without warning at a later date. The effects are variable depending on the which part of the brain and spinal chord is struck by inflammation and the resulting sclerosis.
In July, Helen lost vision in her right eye because of inflammation of the optic nerve caused by MS. For the past six years she has had to use a walking stick, and more recently a walking frame, to get around. With her limited eyesight she is very unsteady on her feet at night.

"I walk very slowly and I don't pick up my feet as fluidly. Unless I'm concentrating I'll trip myself up."

She has had MRI scans of her brain that show numerous plaques, or lesions, but says this does not necessarily reflect the severity of her condition. "That's the funny thing. I'm still mobile and active. It's a strange disease. But I'm definitely slower, like when I'm getting off the bus I always have to apologise to the drivers.

"My big problem is muscle fatigue in my thighs and arms. It's a funny thing and hard to describe. I know some MS people fall asleep at the drop of a hat."

Every second day a Nurse Maude helper gives Helen an injection of the government-funded drug beta interferon.
There are many theories on possible treatments for MS, some sufferers turn to oxygen therapy using hyperbaric chambers more commonly used in diving medicine, B12 injections, and special diets. Helen does not subscribe to these herself, but says if they work for others then they should stick with them.

Though many people see MS as an older person's disease, symptoms usually appear between the ages of 20 and 50 with a peak in the early 30s. Women, people with European ancestry, and those who live in cooler climates are more at risk and generally it becomes more common the further one moves away from the equator. The prevalence of MS is much higher in regions such as New Zealand's South Island, Scotland and Canada than it is in tropical and sub- tropical areas.

For this reason, MS is relatively common in Christchurch and in Helen's experience everyone knows somebody who has it.
"Most people understand a bit about it and they're willing to help you. It's only isolated cases where people are stupid. Once someone said to me that I was very intelligent for someone with MS."

There have been other occasions where people have assumed she is drunk or on drugs because she looks wobbly on her legs. "There was a young bloke, about 16, on Colombo St who said to me, "What drug can I take to be as wasted as you?" I burst out laughing."

The cause of MS is still not known but both genetic and environmental factors are important. Near relatives of those with MS have an increased risk. Exposure early in life to a viral infection that has a long-term effect on immunity is also believed to be likely.

Helen had bacterial meningitis as a child and she speculates this could be one of the factors that made her vulnerable to MS as an adult. Like many other MS patients she is taking part in a Christchurch School of Medicine study led by neurologist Bruce Taylor investigating a possible link between low sun exposure over the course of a lifetime and MS.

Multiple Sclerosis Society national director Nola Rawson says the results of the study, expected in July or August, are eagerly awaited internationally because of hopes they will shed some light on the causes of the disease and explain its geographic pattern.

She is concerned about the lack of respite care available to people who are severely affected by MS. There have been cases of young people being put into resthome care, which Ms Rawson says is unacceptable.

Despite the difficulties she has faced, Helen is philosophical about her experience of MS and grateful that she is still able to lead a reasonably independent life.

"It pisses me off that it's happening to me. But I've had it for such a long time that I'm used to it. I've seen people who are very bad with it and I feel sad for them, some of them are younger than me. Some people have a negative view of MS, they think they'll end up in a wheelchair within six months but I understand it's a long-term thing."

Common symptoms of MS include:

Weakness or poor coordination of the limbs
Impaired balance or instability walking
Sensory disturbances
Blurred or double vision
Impaired urinary or sexual function
Cognitive dysfunction such as impaired memory or concentration
General fatigue