A diagnosis of multiple sclerosis (MS) can have a profound impact on both the individual and the family around them. I spoke to both my own mother and her experiences of my disease, and to two mothers whose sons are in more advanced stages of the condition.
What is multiple sclerosis?
Multiple sclerosis (MS) occurs when your own immune system misidentifies the myelin sheath, a protective cover over your nerve fibres, as a foreign body, and attacks it. Symptoms of MS can vary hugely, but include optic neuritis [an inflammation of the optic nerve that leads to vision loss], fatigue, cognitive problems, and a lack of mobility that can be as severe as paralysis. The disease is believed to be caused by a combination of sunlight (vitamin D) deficiency and genetics.
In the relapsing-remitting stage of multiple sclerosis, symptoms come and go, though they can scar the myelin and leave lasting effects. In 65% of cases this type of MS will transform into secondary progressive, in which there will be no remittance, and the symptoms will get steadily worse over a patient’s lifetime.
Jackie, mother of Chris (relapsing remitting MS)
We first noticed a problem when Chris was sixteen. He started having trouble walking, and he’d complained of numbness in his feet a few months before.
It was difficult getting the diagnosis for MS. At first Chris was misdiagnosed with a trapped nerve by our GP, and it was only after seeing an osteopath that I decided Chris needed to go to the hospital.
We spent a day at Hillingdon hospital, which I’ve thought is a horrible place ever since I gave birth to my daughter there. But we were very lucky, we went on the one day a week the neurology team was present.
Eventually the neurologist came to see Chris, spent a long time with him, then told him he’d need to stay in for more tests, he’d need to stay overnight. He didn’t want to have more tests, he wanted to go home, and the last place I wanted to leave him was at Hillingdon.
Chris had just turned sixteen and wasn’t allowed on the children’s ward any more. By the time I came back Chris had been transferred into an old freezing ward that had been reopened because the swine flu epidemic had filled up the hospital.
He wanted to go home, but we knew if he came home he wouldn’t get the MRI, the lumbar puncture, all the tests he needed. After a few days the consultant came in and finally gave a diagnosis of multiple sclerosis.
I knew some people who had MS and they lived perfectly normal lives, so I wasn’t as terrified as I might have been. I knew it was really hard for Chris, and that was very hard knowing how he was going to cope.
On the internet there were all sorts of stories about people ending up in wheelchairs and all the difficulties that they have and I think that’s how Chris saw himself, it took him a long time to come to terms with it.
It would have been really useful to talk to other Mums whose kids had MS. I’ve always found that if you’ve got something wrong or got a problem, talking to other people who have the same thing is helpful, and there wasn’t anyone to talk to. I’ve never met anybody with a child diagnosed with the disease.
The most important thing is to live every day as it comes. At the moment Chris’ life isn’t terribly affected by the diagnosis. He’s had optic neuritis since he was diagnosed and he has to take pills which can make his face flush. But obviously we know that it could get worse.
We’re thinking about moving out, but to somewhere with a downstairs bedroom in case my parents come to stay. If it ever came to looking after Chris, which I don’t think it will, he could stay there.
Nasillah, mother of Amir (secondary progressive MS)
Amir was diagnosed just after his thirteenth birthday. In the first year he was fine, but after two years he started dragging his leg. It was tough for him, he was getting bullied at school for it.
After another relapse, he couldn’t stand up anymore, and after another relapse his vision has gone, he can’t see details, everything is blurry. He now has a slurred voice too, which started about two years ago. He wanted to be a movie editor, he had a work placement when he was healthy. Now he doesn’t even have his eyesight.
Amir’s personality has changed since the MS, he’s struggled with depression and anxiety. I asked for a psychologist on the NHS. I felt like she was acting like a detective, like she was interrogating my son in a murder case. She didn’t get to the bottom of the feelings, just following a textbook.
To me, the NHS is useless. They treat people with headaches and sprained wrists, but they don’t do anything for my son. I think the money they spend on the NHS, they should put up people’s wages, and let them pay for their own medical care.
From the bottom my heart I think NHS needs to go. They’re robbing the government.
Anne, mother of Stephen (secondary progressive MS)
Since Stephen was diagnosed nineteen years ago it’s been a slow process, because initially he had a much milder form of the disease. He was on beta-interferon [an injectable treatment] for a number of years, but it didn’t make any difference.
His MS still turned into secondary progressive, and there there is no drug to treat that. He has vitamin D tablets, that’s about the extent of his treatment now.
One of the most upsetting things for us has been the loss of Stephen’s mental faculties. He used to have a full time job working in accounts for NHS centres in Paddington and Camden. He’s still quite good at numbers, his long-term memory can cope with all of that.
He also used to be an excellent chess player. Stephen still plays chess with his father, though my husband has to work quite hard at letting him win periodically, he’s losing his grasp of the game.
Sometimes it feels like I’m treating an older relative, the way the disease has progressed. When we talk to him he gets incredibly repetitive, four or five times he will ask something trivial like where is his sister looking to live, it’s always just the same question over and over again.
Last week I went to a funeral of someone he knew when he was at primary school, they used to run across the railway line at Paddington together, which came as a shock to me. I asked him in the car if he could remember that but he couldn’t. You thought if it was something so severe he might remember.
We have him stay at our house from time to time. He came for a week at Easter and he’s coming at the end of this month. We like to go up to the Lake District and used to take him up there but I’m not sure I will this time, I’m not sure I can manage him on the train.
Our main problem is our lack of help. Last year for six months he had an MS Nurse, but the NHS decided not to fund them for any longer. Having an MS Nurse really made a difference. Stephen’s wife could ring her up, she could come round, she could deal with problems, she could deal with anxieties too, she could be absolutely wonderful.
That would be my message, there should be an MS Nurse in every borough, and other services should be prepared to offer them.
One can never do enough, and you can feel guilty that you aren’t doing more. I spend two days a week with Stephen, during which I try to bring him to Harrow MS centre for a short while.
Early this year I had an operation and wasn’t able to bring him, and you worry. Stephen’s wife has to go out, she works part-time, and he’s left alone.
We worry about the future, how will we cope with that, how will we enable him to have some quality of life. It’s very sad to see but saying that doesn’t help. You just get on with your days, don’t you?