It took some time for Karen Hynes to be diagnosed with multiple sclerosis and then another while for her to accept life with the condition
I WAS 19 years old when I first experienced some symptoms of multiple sclerosis (MS). At the time, I was working in the Arrivals area of Dublin Airport as one of the Aer Lingus ground staff. I had pins and needles sensations that you usually get from sitting in an awkward position except, in my case, they lasted for a few weeks.
My mother also noticed that I was dragging my leg. I made random excuses but she insisted that I go to the doctor. The doctor gave me a support sock to wear on my leg.
My mother wasn’t happy with that and insisted that I go to another doctor. This time, the doctor asked me to sit up on the bed, close my eyes and describe the sensation I felt in my legs. It felt like a blunt instrument, similar to the back of a spoon, hitting my leg. But in fact when I looked, the doctor had given me little pin pricks on my leg that I hadn’t felt.
He asked me to call my mother into the surgery and he explained that it could be a virus but, at worst, it could be multiple sclerosis. I laughed it off but my mother was getting very nervous. He suggested that we go straight to casualty in St Vincent’s Hospital as it would take too long to get an appointment with a neurologist.
At the hospital, I had various scans and a lumber puncture. The diagnosis was inconclusive initially because they have to watch your progress but within about six months, a diagnosis of MS was confirmed.
In the beginning, I denied what was happening and shut people out. I was scared, ashamed and lost. I didn’t know anyone who had MS and assumed that anyone who had the condition would end up in a wheelchair.
I left my job in Aer Lingus and moved back to live with my family. They have been very supportive to me throughout, even though I sometimes rebelled against their inclination to wrap me in cotton wool and protect me.
It took a while for me to learn to deal with having MS. My family were giving me books which I didn’t want to read but glanced at nonetheless. My sister contacted the MS Society and told me about a weekend they had organised for people who were recently diagnosed. I decided to go on this weekend which, I suppose, was the beginning of accepting that I had this auto-immune neurological disease.
In the first few years of having MS, I had some problems with my legs. Sometimes, they just wouldn’t move or one leg would drag and I’d have to sit down for a while.
Other times, I would get numb sensations in various parts of my body, for example, on the left side of my face. During these times, I would go on intravenous steroids for four days and things would improve. The thing about MS is that no two sufferers have the same symptoms.
When I was in my early 20s, I was put on beta interferon injections which I self-administered every second day. I remained on this treatment for a few years and did relatively well. At that stage, I had returned to work and worked full-time in a bank.
When I was 24, I decided to leave my job and go to Australia with my cousin and a friend. I’m a very determined person so I didn’t want MS to stop me from travelling. My boyfriend followed me out and we ended up living in Rockhampton in Queensland for three years. While I was in Australia, I got in touch with MS Australia and even did a fundraising skydive for them which raised $3,000 in sponsorship.
I had a GP while I was there and ended up in hospital a few times due to relapses. In fact, when I was 26, I had three relapses in one year. During one of these, my leg, arm and hand became numb and I couldn’t write. It was a nightmare.
I went on intravenous steroids for four days and then had a couple of weeks with physiotherapy every second day before I could bounce back.
I had a lot of friends who knew about my condition. I have always felt that I do what I can and that I know my limitations but during that last year in Australia things got to such a level that I decided to come home. My neurologist in Dublin had spoken to my mother about starting my on the new drug, Tysabri.
It was a tough decision to leave Australia but we knew we had to. My boyfriend and I came back to Ireland in 2006. I was started on a monthly intravenous dose of Tysabri. On my sixth dose, I had anaphylactic shock and was taken off the drug. I was so upset. I said, please put me back on the drug but I soon realised that my system just wasn’t suited to it.
Then, I was put on mitoxantrone, a chemotherapy drug that is administered intravenously every three months. I found this very upsetting initially but now I’ve accepted it. I’ve been on this treatment every three months for about two years now. I go into hospital in the morning for the treatment and am home in the afternoon. I need about 10 days off work to get back to normal afterwards.
I’ve been in remission for over a year now apart from some mild MS seizures, during which I just have to stop everything and wait until the spasm passes. It’s quite scary sometimes because I’m the type of person who likes to be in control.
I work part-time in the Bank of Ireland and live nearby in a city centre apartment. I’m also part of an actors’ co-op which meets once a week for rehearsals. I love this. In fact, my passion is acting. I’ve got a great group of friends who together with my family are of huge support to me. My boyfriend and I split up amicably after six years.
Overall, I feel that I have MS but it hasn’t got me. I talk freely about it to people I meet. Most people say to me, you don’t look like someone who has MS. There are days when I curse the disease and the fatigue is always there. But, when it comes, I sit and relax and take my time. I’ve just one life to live and this is it so I’ll give it my best shot.
In conversation with Sylvia Thompson
The first World MS day takes place on May 27th. See www.ms-society.ie for details
The Multiple Scleroris Society helpline number is 1850 233233
If you have had a health experience – good or bad – you would like to talk about, please contact healthsupplement@irishtimes.com