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Interview: James West, Nicki Ward Abel
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| MS in focus Issue
14
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2009
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Public relations consultant James West from Birmingham, UK, is 33 and has lived with MS for ten years. He talks to MS Nurse Nicki Ward-Abel about his experience. |
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Q. Tell us about your diagnosis – what were the first symptoms you noticed?
The first thing was a loss of sensation – when I stepped on a metal strip in my bathroom doorway, I could feel it with my right foot but not the left.
A. I played a lot of football and after playing my legs would spasm. After that I got a lot of tightness in my stomach. I thought I had appendicitis and went to hospital. They sent me to a neurologist, who diagnosed MS.
It was very hard to come to terms with aged 23. It might have been easier if it had been a disease with a more understood prognosis. But the neurologist basically said: “There’s nothing we can do.”
Q. In the first five years, how did it affect you?
A. Apart from odd symptoms that came and went, I felt absolutely fine. I had optic neuritis, my eyes were blurry sometimes. But I could still walk and even run and play football. I’d have a relapse every nine months, regular as clockwork. They were treated with steroids and after each one I would recover almost 99%.
Q. And has it changed since then?
A. In my late 20s, I began to get more symptoms. I went from walking perfectly to limping a little to dragging my left foot. Then that transferred to my right leg and I get stiffness in my legs. I am still having relapses but in between I have started to progress, albeit slowly.
My neurologist hasn’t said I have SPMS in concrete terms, but I feel like that’s where I am now. But I’m still having relapses, so it’s a grey area.
Q. What disease-modifying treatments have you had, and how have you found them?
A. I decided to go for Avonex initially because it was a once-a-week injection, which fits with my lifestyle.
I had that for nearly three years and was tolerating it well. I still had relapses every nine months but they weren’t as bad and I recovered quicker.
Then I had a new neurologist, who suggested I go onto Rebif, as I was experiencing disabling relapses despite being on Avonex. This meant an injection three times a week. Initially it seemed to be working well but within three months I was getting really nasty flu-like symptoms and I became very depressed and irritable. On my honeymoon I felt so aggressive and unpredictable, I decided to come off it and the change was almost immediate.
I had three months with no disease-modifying drugs and went back to being myself. But after the initial high, I realised I was feeling seriously ill and the outlook wasn’t good. My legs were very stiff, I had problems transferring from leg to leg. I was having really bad bladder problems, the fatigue was bad, and I felt I would need a wheelchair really soon. I also had another relapse at this time.
I was offered a drug called Mitoxantrone – it’s a chemotherapy drug, used to treat breast cancer, and is really toxic. Potential side effects include leukaemia, heart failure and infertility. The long term effects aren’t really known, but in the short term it can stop MS progressing. I thought it over for some months with my wife and my family and decided to go for it.
Q. How did you make the decision?
A. I weighed it up and in the end, it wasn’t a hard
decision. I’d like to keep mobile for as long as I can
because I enjoy life and there’s more I want to do. If I
die of heart failure, I die of heart failure; it’s worth it to
try to prolong my mobility for a few years.
Q. And have you done well on the
treatment?
A. The first time I took it my white blood cell count dropped and I was in hospital for ten days.
But now I feel healthy. It hasn’t greatly affected my disability – I walk with a stick and I still have bladder problems – but it has plateau’d. And it’s completely reversed my fatigue. I feel confident doing anything now. I’ve put in a request to increase my hours at work, which I had reduced because of the MS. It has really given my energy a boost and I’d like to keep taking it as long as possible.
Q. What aspects of living with MS do you find hardest to manage?
A. My walking is bad for a man my age, although it has improved since I’ve had the chemotherapy. And managing stiffness in my legs is one of the hardest things on a day-to-day level because there’s nothing I have found that takes that away. And my bladder continues to be a problem.
But perhaps the hardest thing is psychological: knowing that you live with a condition that could in the long term make you very ill, which is at the moment incurable and for which treatments are quite limited when you get into SP stage. Having MS can feel like an indefinite prison sentence and it’s really difficult to come to terms with that.
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