A young Australian man, diagnosed with Multiple Sclerosis (MS) at just 26, has spoken candidly about the profound “loss of identity” the disease has inflicted upon him, following initial symptoms of vision loss and unexpected falls during a holiday.
George Mckinty, now 30, first noticed a significant issue with his eyesight in August 2021. While at the gym, he realised he couldn’t see properly out of one eye. Later that year, on a trip to Ibiza with mates, he experienced repeated falls, an embarrassing experience he initially attributed to the depth perception problems stemming from his vision issues.
However, a visit to an optician revealed a problem with his optic nerve, leading to a referral to a neurologist. Following an MRI scan and a lumbar puncture, George received a definitive diagnosis of Multiple Sclerosis.
MS is a chronic, incurable condition that affects the brain and spinal cord, leading to a range of symptoms including vision disturbances, extreme fatigue, coordination difficulties, muscle spasms, and bladder control issues.
A Personal Journey with MS
George revealed that he had a personal connection to the disease, recalling an uncle who used a wheelchair due to MS. “I thought: ‘Oh, my God, that’s going to happen to me’,” he admitted. Despite this initial fear, George’s relapsing-remitting form of MS has been managed effectively with treatment, preventing any further relapses since his initial diagnosis in 2021.
The first clear signs of MS emerged in August 2021. Covering his left eye, George discovered he had lost approximately 80 per cent of the vision in his right eye, accompanied by severe double vision that significantly impacted his depth perception. He later learned that this exacerbation of symptoms, experienced at the gym, was likely due to Uhthoff’s phenomenon – a temporary worsening of MS symptoms brought on by an increase in body temperature. This same phenomenon, he believes, contributed to his falls during his Ibiza trip just three weeks later.
Navigating Early Symptoms
During his holiday, the repeated falls were initially dismissed as a consequence of his impaired depth perception. However, these incidents were compounded by developing bladder symptoms, including hesitancy and nocturia – the need to urinate multiple times during the night. These combined issues fuelled his growing concern that something more serious was at play.
On October 12, 2021, an MRI scan revealed lesions on his brain and spinal cord. Doctors informed George they were “almost certain” he had MS. A subsequent lumbar puncture, which analyses cerebrospinal fluid for indicators of an elevated antibody level, was performed to confirm the diagnosis.
In March 2022, after the lumbar puncture, George’s diagnosis of relapsing-remitting MS was officially confirmed. This is the most common form of the disease, accounting for 85 per cent of cases.
Treatment and Ongoing Challenges
George commenced treatment almost immediately. He undergoes intravenous administration of ocrelizumab every six months. This treatment, according to the MS Trust, is highly effective, reducing the frequency of relapses by around 70 per cent.
The infusions typically last between four to six hours, and George reports that the treatment has been instrumental in keeping his condition stable. However, while the medication prevents further relapses, it doesn’t reverse the existing damage 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 explained. “It affects you socially, because I’d love to play sports, my friends all play sports, and I can’t…”
He is actively working on improving his mobility, particularly for his legs, with the help of a physiotherapist. “I do a lot of stretching, a lot of hip exercises, just to improve my mobility…”
The Bladder Battle and Identity Shift
The bladder symptoms remain a significant frustration. “My bladder’s the most annoying, really, because it gives me nocturia, which is when you get up at night to use the toilet, and I get it four or five times a night. I self-catheterise because I can’t fully empty it, and if you can’t fully empty your bladder, it can become stagnant, and that can cause a UTI.” George is now looking into private treatment involving Botox injections for his bladder to help manage the issue, hoping it will improve his sleep.
Beyond the physical challenges, George has grappled with the profound impact MS has had on his social life and his sense of self. “It’s taken a vast dip, massively,” he said of his social life. “I can’t drink the same, I can’t go out as much. I get tired. Fatigue is a factor in my life, definitely, because of the lack of sleep because of the nocturia.”
The most significant hurdle, he states, is the “loss of identity.” He describes the struggle of adapting to life with a chronic illness: “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…”
He reflects on the early days: “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.” He muses on the potential impact of MS on the limbic system, which governs emotions, or simply the psychological toll of living with an incurable disease.
The Power of Lifestyle and Support
A crucial element that helps George maintain his well-being is his commitment to the gym. Having engaged in resistance training for over a decade, he now trains three to four times weekly. He firmly believes that staying active is vital for managing his MS, both mentally and physically.
“It keeps me sane, keeps my mind at ease,” he shared. “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.”
Alexandra Holden, CEO of Overcoming MS, echoes George’s sentiment. “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.” She highlights the critical need for accessible, evidence-based lifestyle strategies, especially with current pressures on healthcare resources. “The biggest challenge right now is lack of awareness, and misinformation, stopping people diagnosed with MS from accessing the full benefits of lifestyle-related support.”
Looking Ahead
While George plans to continue his treatment to prevent relapses, he acknowledges the unpredictable nature of MS. “MS will take what it wants,” he stated frankly. “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 remains optimistic, adding, “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.”
For individuals seeking more information on the positive impact of lifestyle modifications for those living with MS, the resource: http://overcomingms.org/notadestiny is recommended.
