Monday 20 August 2018

'I woke up and could see absolutely nothing out of my right eye' - Irish woman (30) on finally getting MS diagnosis

After suffering years of unexplained headaches and dizzy spells, Aoife Kirwan was relieved to get a diagnosis, writes Arlene Harris

Aoife Kirwan, who has been diagnosed with multiple sclerosis. Photo: Tony Gavin
Aoife Kirwan, who has been diagnosed with multiple sclerosis. Photo: Tony Gavin

When Aoife Kirwan was a teenager she suffered with very bad headaches and despite having tests, no one could figure out what was wrong with her — but doctors assumed the problem was associated with her vision.

However, as the years went by, the headaches continued and the Kildare woman (now 30) also began to suffer from dizzy spells. But it was only when she was in her early twenties and started to experience numbness in her hands and feet — and finally a terrifying blindness in her right eye — that other questions began to be asked and she was finally diagnosed with the debilitating condition multiple sclerosis (MS).

“When I was a teenager, I was always attending various hospital appointments to try and figure out why I was getting such bad headaches,” says Aoife. “But despite lots of different examinations, nothing was certain and doctors thought I was getting ocular migraines.

“I went through a number of vision tests as back then headaches weren’t associated with MS — although I have recently read a report which says they are now a recognised symptom. But in my teens, even though I started to get frequent dizzy spells, no one had any answers for me.”

Aoife, who now works for MS Ireland, went through several years of believing that it was normal to feel unwell every day — until she partially lost her sight and further tests revealed the debilitating condition.

“I grew up with health issues so began to think that feeling dizzy and suffering from splitting headaches was just how things were — it was my normal,” she says. “Then as I got older I had a string of other symptoms and always felt a bit off colour.  For example, when I was in art college in my twenties I started to get numbness in my index finger. That should have been a warning sign, but I put it down to the amount of time I was using pencils and brushes and didn’t think too much more about it — I just believed it was something else I would have to put up with.

“Then in 2010, I was over in London on a short trip and I remember the weather was particularly cold and I lost all the feeling in my feet. I assumed it was just due to the fact that I was absolutely freezing but when I came back home a couple of days later, my feet were still numb and felt as if I was wearing really big wellies as I couldn’t feel my shoes at all.

“I went to the doctor who told me it was just because I was stressed or perhaps I had been lying in a strange position.

“But I knew there had to be more to it and a couple of months later, in February 2011, I started having issues with my eyesight as everything suddenly looked a bit blurred. The only thing I can liken it to is trying to look through sunglasses where the lens is smeared. I would rub my eyes to try and clear my sight, but nothing happened until one morning I woke up and could see absolutely nothing out of my right eye — it was so frightening.”

With the onset of this alarming symptom, the young woman was referred immediately for eye tests and although MS was suggested almost straight away, it wasn’t until she had an MRI scan and a lumbar puncture that the condition was confirmed.

“I was with my mum when I got results of the tests and although we were both a bit shocked, to be quite honest I was actually almost relieved to hear that I had MS,” she recalls. “Thanks to watching programmes like Grey’s Anatomy, when I started to have problems with my eyesight, I began to think that I had an inoperable brain tumour so I thought MS was something I could live with — and I was right.

“My family and friends have been incredibly supportive and really helped me to stay on top of things since my diagnosis. I was put on medication at the beginning and these days I live a very active life. I don’t know if it is the treatment or if the condition is in remission, but I now have very few symptoms.

“My eyesight has completely returned, I don’t suffer from numbness anymore and everything that was wrong seems to have corrected itself — in fact, I would say that people would be hard pushed to see that I had any problem at all.”

And while, like the rest of us, Aoife does have good and bad days, she would urge other people who have just been diagnosed with MS to not let it get them down and to try to be positive about the future. “Of course, I have my ups and downs, and there are days when I feel very tired and forgetful, but I haven’t let MS take control of my life,” she says.

“So I would advise anyone who is suffering with similar symptoms to get them checked out as soon as possible, it might be nothing, but also it might be something which can be treated. And we all know our own bodies, so it’s important to be vigilant, keep a log of symptoms or incidents, don’t be afraid to ask questions and make sure to be confident because after all, when we visit our doctor with concerns, we should be the most important person in the room.

“I know there isn’t a cure for MS, but that’s OK as I have learned how to live with it. I know my strengths and my limitations and I am living a healthy life. In fact, having MS has made me super aware of the importance of diet, exercise and sleep. So my advice to people who have just been diagnosed would be to stay positive as it is easy to become overwhelmed by it and let it define you, but this will do you no good at all. Life goes on and you have to make sure you go on with it.”

Harriet Doig — information, advocacy and research officer for Multiple Sclerosis Ireland — says it can be difficult to diagnose MS as symptoms are not always obvious in the beginning.

“The presence, severity and duration of all MS symptoms vary considerably from person to person,” she says. “Some of the symptoms are immediately obvious such as reduced mobility, which is often the most visually apparent. Other symptoms such as fatigue, changes in sensation, memory and concentration problems are often described as ‘hidden’ symptoms and can be difficult to explain to others.”

Aoife Kirwan is living well with MS and Doig says with the right treatment it is possible for others to do the same.

“Managing the symptoms and effects of MS can often be achieved using a variety of medical and non-medical interventions,” she explains. “In addition, a healthy lifestyle including a balanced diet, regular exercise and the reduction of stress can also help.

“Medical treatments for the condition concentrate on managing symptoms, reducing inflammation during relapses or changing the course of the disease in some way with disease modifying drugs, while a number of non-medical interventions can help to manage the impact of MS greatly.

“Rehabilitation is a collective term used to describe a number of therapies that can help to maintain, restore or improve physical and cognitive functioning, so physiotherapy plays a significant role (in the management of the condition by maintaining muscle strength and mobility. Speech and language therapy can help with speech and swallowing and an occupational therapist can advise on techniques, aids and appliances that can increase independence.”

• For more info, see ms-society.ie, call 1850 233 233 or email info@ms-society.ie

MS Ireland and Novartis Ireland Ltd recently hosted MS Research Explored a public meeting for people living with MS, their family and friends and the general public. To watch the video recording please visit: http://webcastireland.com/w/live-broadcasts/

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