'I kept falling over on Ibiza lads holiday - it turned out to be MS'
PA MediaA 26-year-old man was diagnosed with multiple sclerosis (MS) after noticing problems with his vision and falling over while on holiday with friends in Ibiza.
George Mckinty, from Barry, Vale of Glamorgan, said the disease had "devastated" his social life and caused a "loss of identity" but maintaining a healthy lifestyle by training at the gym and walking his two dogs "keeps [him] sane".
He said the "most annoying" symptom of the condition was waking up to five times a night to urinate, and said he planned to pay privately treatment to get bladder Botox to address the issue due to NHS waiting lists.
"That should calm it down, hopefully, and I'll be able to sleep fully," he said.
George, an enterprise account manager for a financial technology firm, noticed he "couldn't see out of one eye properly" when exercising in August 2021.
When he covered his left eye, he realised he had lost about 80% of the vision in his right eye, with severe double vision that affected his depth perception.
Later, he learned this flare-up would happen in the gym due to Uhthoff's phenomenon – a temporary worsening of MS symptoms triggered by increased body temperature – which he also encountered on a holiday to Ibiza with friends three weeks later.
George said he had several "embarrassing" falls while on the holiday, initially chalking it up to his depth perception being affected by his vision problems.
But he feared something more serious might be happening after experiencing bladder issues, including needing to get up several times a night to urinate.
After visiting an optician who identified a problem with his optic nerve and referred him to a neurologist, George received an MRI and lumbar puncture which confirmed his MS diagnosis in March 2022.
PA MediaMS is an incurable condition which affects the brain and spinal cord and causes symptoms such as vision problems, fatigue, clumsiness, muscle spasms and urinary problems.
"I had an uncle with MS [who was] in a wheelchair. I thought: 'Oh my god, that's going to happen to me'," the 30-year-old said.
He has, however, been able to manage the symptoms of his relapsing remitting MS, which is characterised by periods of worsening symptoms and periods of recovery due to effective treatment, and has not faced a relapse since 2021.
What is relapsing remitting MS?
Relapsing remitting MS is the most common form of the disease, and affects 85% of cases.
After being diagnosed, George almost immediately began treatment to help manage his symptoms, which involves intravenous administration of ocrelizumab once every six months over the course of four to six hours.
According to the MS Trust, this treatment reduces the number of relapses by about 70%.
George said it had "kept [his] condition stable all the way through".
However, while the treatment he receives is effective at preventing another relapse, he still faces problems from the damage that has already been done to his central nervous system.
"I've still got the eye issues in my right eye, where I've got double vision (that affects) depth perception. So I can't do a lot of sports… which is aggravating," he said.
"It affects you socially, because I'd love to play sports, my friends all play sports, and I can't.
"[For] my leg, I've recently been with a physiotherapist, which is really good. I do a lot of stretching, a lot of hip exercises, just to improve my mobility."
PA MediaGeorge says issues with his bladder have been the "most annoying" as he sometimes has to get up four or five times a night to use the toilet - a problem known as nocturia.
He said he self-catheterised because he could not fully empty his bladder and this could lead to him developing a urinary tract infection (UTI).
Botulinum toxin - commonly known by the brand name Botox - is more widely known for its use as a cosmetic treatment which works by blocking signals from the nerves that control the facial muscles.
The MS Trust said Botox could help with bladder symptoms – specifically, bladder accidents (incontinence) and feelings of urgently needing to wee.
"Botulinum toxin is usually used when you've tried other treatment options, such as oral medications, and they haven't worked for you," an MS Trust spokesperson said.
It must be given by an appropriately trained health professional, they added.
'It affected my confidence'
George has also struggled with the impact the disease has had on his social life and identity, which he said had taken a "vast dip, massively".
Since his diagnosis he has not been able to drink or go out as much with friends as he did previously, he said, while adding fatigue due to the nocturia "is a factor in my life".
"It's the loss of identity, that's the worst challenge overall," he said.
"You have to become confident in saying no. People say: 'Don't let it dominate your life. It's just something you have', whatever. But it does dominate your life a lot…
"Early on, it affected my confidence quite a bit.
"It's been four years, and I would say this year is the first time I started to feel better, in all honesty – like, mentally better about it, because it is a depressing thing.
"I mean, MS does affect your limbic system, which controls your emotions. Maybe that's impacted, I don't know. Maybe it's just because I've got a disease that's incurable."
George said one thing that has really helped him manage his MS both mentally and physically is training at the gym three to four times per week.
"It keeps me sane, keeps my mind at ease," he said.
"Things like nutrition and resistance training – I've got two dogs I walk every single day, I try to do 12,000 steps a day… I think those things [help with maintaining] a steady state of dopamine."
'MS will take what it wants'
Alexandra Holden, chief executive of Overcoming MS, said: "Lifestyle changes, while not a cure, can and do make a real difference to symptoms and quality of life for people living with MS.
"Yet too many people don't know this, or find information about it in a haphazard way.
"With NHS resources under pressure, it's more important than ever that people have access to evidence-based lifestyle strategies to support their health, alongside medication."
She said the biggest challenge right now was a lack of awareness, and misinformation, stopping people diagnosed with MS from "accessing the full benefits of lifestyle-related support".
Looking to the future, George said he planned to continue his treatment to ward off a relapse, but knows that "MS will take what it wants".
"It really will, which is a scary thing to even say, to be honest, but there's always going to be a way around it," he added.
"There's always a workaround, there's always a way to reframe it in your mind, but also physically, what you can do with those symptoms."
