Why multiple sclerosis will never hold us back
MS sufferers Tina McGonagle, from Belfast, and Antrim dad David McCullough tell Linda Stewart how, thanks to advances in drug treatments, they won’t let the disease stop them living life to the full.
It’s one of the most common conditions of the central nervous system to affect young adults — yet one in five people from the UK don’t know what MS stands for, and almost 70% admit to being unaware of the major symptoms.
And that’s despite one-third of people knowing someone who lives with MS (multiple sclerosis).
MS affects around 4,500 people here. And we have a particularly high level of MS when compared to countries with similar population sizes.
‘This is not going to kill me ... life has just got a little slower’
Retired pharmacy dispenser Tina McGonagle (34), who lives in south Belfast with her daughter Emma (13), volunteers with the MS Society. She says:
As a teenager I was always out doing things. You couldn’t keep me in the house at the weekend. I was also working from the age of 13 in clothes shops.
I walked everywhere — into town and home again — and I would never think twice about it.
The hardest part of being disabled is facing up to the fact that you don’t have the energy any more. Because I’m on medications I can’t drink alcohol, so I can’t go out and socialise the way I used to. But I still love getting out for a meal with friends. I’m always the designated driver but don’t mind.
When I was pregnant with my daughter Emma I suffered from pre-eclampsia. When Emma was a baby I used to walk with her in the buggy, but found I would feel shaky and have to take a break. I also had pain in my neck and lower back.
I constantly felt weak and as though there was something wrong with me, but I kept getting up and going to work. I put the back pain down to other things, and the fatigue was because I was new mum and back at work.
In 2008 and 2009, my symptoms came to the fore. It started with a lack of feeling in my legs and there were symptoms of vertigo and dizzy spells.
But things came to a head in 2011 and 2012, when my lower back got an awful lot worse. With working in a pharmacy I was aware of MS and its symptoms and they rang true to me.
Then the numbness started to spread. I couldn’t feel my thighs and then it started from the other direction and I lost sensation in my left big toe.
One day I was standing in work and the numbness spread from my calf right up to my thigh within minutes. That was the second of my A&E trips — the doctors said it could be a slipped disc, MS or thrombosis.
No slipped disc was found after an MRI, but an anomaly was, which I knew could be an MS lesion on my spine.
I was on the waiting list for a while to get a referral, but once I’d seen the neurologist and they ran through my history and got an MRI, there was no doubting that it was MS. Then, from one MRI to the next more changes were detected and I was diagnosed with relapse remitting MS of a highly active nature.
I was due to start self injection in 2013, but because it was rapidly evolving I needed to start a much stronger drug. By October that year, I began hospital administered IV drugs, which meant two to three hours at outpatients every month.
Since being on the drug, I’ve only had normal sensory issues like pain, fatigue and being prone to infection — I’ve had shingles a couple of times. There has been no relapse.
Emma has been there with me every step of the way — she is a very helpful little girl indeed. She’s in grammar school now and is learning home economics so she’s able to make dinners as well.
There are misconceptions about MS.
I use a stick and have a blue badge but people think ‘there is nothing wrong with her’. MS affects everyone differently — like a snowflake, no two patients are exactly the same.
People don’t really know about MS and what it is, and those who do tend to think of somebody being in a wheelchair which is how it used to be.
The drugs we have now are very different to what was available 25-30 years ago when MRIs didn’t exist.
It doesn’t have to be awful. There are absolutely rubbish days and okay days. I’ll never be 100% back to what I was or do the things I used to do.
I work as a receptionist at the MS Society for a couple of hours on Friday, but if I’m not having a good day, that’s fine and I don’t need to go in. If that was a normal job, it wouldn’t go down that well.
Some days the pain is absolutely everywhere — if my hair had feelings, it would hurt.
But having MS is not the end of the world. It’s not going to kill me — life has just got a little slower. I’ve been diagnosed at such a good time — now there are so many drugs available.”
'I’m going to climb up Mont Blanc in June for charity'
Retired government worker David McCullough (51) lives in Antrim with his wife Karen (40), a civil servant, and their son Matthew (4). He says:
I grew up across the road in a farmhouse. We’ve just finished building a house here — it was designed to take into consideration any future issues with my MS.
I was one of seven children. We grew up on the farm, a big gang of us — there was always work to be done, animals to feed and to be cleaned out.
When I was 21 I started working for the government and part of that involved going abroad. I was normally in good health and didn’t have a check-up until a trip in 2007. I was in New York doing some training and my symptoms started. I couldn’t understand it.
The first symptom was that I couldn’t stay awake after 7pm at night as a massive fatigue would overcome me. I was also dragging my left leg — some of my colleagues thought it was possibly stroke-related. I flew back home and was admitted straight away into Antrim Area Hospital.
I was fortunate to get a clear diagnosis of MS quickly. Some sufferers can wait for years before they know they definitely have it.
Ultimately the MRI scan showed up the lesions on the brain and that was the indicator that it was MS.
Having said that, my wife had practically diagnosed me on the computer before the doctors told me. She was going home every night and checking out the symptoms and she suspected that was what I had.
I got into treatment as soon as I could. Three different injectable drugs were tried out until I could find something that worked without causing massive side effects. Last year my meds were available in tablet form which I take twice a day now.
I didn’t go into a big depression about having MS. I’m pretty easy going and very little bothers me — I couldn’t change what I had so I get on with life as best I can.
There are many people far worse off, both with MS and other diseases. In the last couple of weeks I’ve read about people with MS who are in a bad way.
The diagnosis more or less forced me into early retirement.
It’s almost 10 years now since I was diagnosed and I get fatigued quite easily.
A weakness on my left side is getting worse and the symptoms are slowly creeping up on me.
So I keep taking the medicine and have a positive attitude.
My advice is to not let it obstruct you and just carry on with life as well as you can.
Whenever I get a chance, I go to meetings of the MS Support group in Antrim.
When I was diagnosed we had been trying for Matthew. Ultimately he was an IVF baby as we had been trying for five years and in our last go, he appeared, which we were overjoyed about. At the minute I’m a part-time childminder.
My family are very supportive when you need them. When I’m overcome with fatigue, Karen would take on her share of looking after Matthew and I have to go to bed as it’s the only thing that helps.
Last year in London a friend, who is a Yeoman Warder at the Tower of London and has MS, came up with this idea of climbing Mont Blanc to raise money for the MS Trust and asked me to be on the team.
So I’m committed to climbing Mont Blanc in June. I’d never climbed Slieve Donard in my life until January and now I’ve dragged myself up it 10 times, although it never seems to get any easier. There’s six of us and we’re trying to raise £60,000. Our page is www.mtblancforms.com.
While Matthew is only four he has, on occasions, climbed Slemish with me and even part of the way up Slieve Donard.
We’ve also climbed up past the caves on Cave Hill.
He knows I’m going to try and climb Mont Blanc and, when it suits, he comes along with me. He likes to get involved.”
Facts and treatments behind multiple sclerosis
● More than 100,000 people in the UK have MS. For Northern Ireland the figure is around 4,500.
● Multiple sclerosis (MS) is a condition of the central nervous system. It is unpredictable and different for everyone — one day you can be fine, the next you might lose your sight or be unable to move.
● A substance called myelin protects the nerve fibres in the central nervous system. In MS, your immune system mistakes myelin for a foreign body and attacks it. Nerve damage causes the increase in disability that can occur over a period of time.
● Symptoms usually start in your 20s and 30s and can include sight loss, pain, fatigue, incontinence and disability. Once diagnosed, MS stays with you for life, but treatments and specialists can help you to manage the condition and its symptoms.