For nearly two decades Karin Lines-Lwin knew something wasn’t right with her health.
She had a variety of symptoms including migraines, heat and cold sensitivity and vision issues that health professionals weren’t quite able to piece together.
“I was having splitting migraines, but light or sound wasn’t affecting me — it wasn’t like a normal migraine,” she told SBS World News.
“After that I had really chronic back pains. I’d go to the doctor, she’d say ‘oh you’re working too hard'”.
Karin said she was also told: “I think you just need physio.”
She was living on Christmas Island, where medical support can be minimal.
The Panadol she was prescribed didn’t cut through the pain she was in and did nothing to help her vision.
“I could see kids in uniforms, but I couldn’t see faces.”
Last year, a physio in Perth suggested she could have a neurological condition because she couldn’t feel the tremors after he tapped her feet.
He referred her to a Perth hospital, where she was finally diagnosed with multiple sclerosis, (commonly known as MS), the most common acquired neurological disease in younger adults around the world, with over 2.8 million people impacted globally.
MS Australia says the disease means the body’s own immune system mistakenly attacks and damages the fatty material — called myelin — around the nerves.
Kerin says swimming helps manage her MS. Source: SBS News / Christopher Tan
Symptoms vary between people and can come and go, including severe pain, walking difficulties, debilitating fatigue, partial blindness and thinking and memory issues.
Karin asked the doctor what the cure was but he simply replied: “There is no cure.”
After 18 years on Christmas Island, Karin made the difficult decision to move to Perth to get better support for her condition.
She says she had a bit of denial about some of her symptoms because she had always been so active and shrugged off the pain.
“As a kid I was very active, I would climb a mountain behind my house … I would ride my bike every day” she said.
Her symptoms now also include difficulty standing and moving, which has been a blow to the former marathon runner.
There were no psychologists on Christmas Island to help Karin with her mental health, which has suffered because of MS.
She wants others to get diagnosed and get the help they need — what she wishes she did.
There are more than 33,000 Australians living with MS and on World MS Day (Thursday 30 May) a new MS Australia report has revealed the urgent need for increased investment in research and awareness of the disease.
MS Australia says the number of people diagnosed with the disease is increasing at an alarming rate.
The report has revealed the average time to diagnosis has reduced from five years to just under four years, which is a positive sign as earlier detection of MS would empower experts to shut down the attack on the brain much earlier.
The organisation’s head of research Julia Morahan told SBS World News MS can be delayed or significantly halted from the time it is first seen in the clinic.
“The key thing is for most people to get an MRI which will aid in the diagnosis.”
“It’s never too late to get a diagnosis – treatments are available in Australia and they are very effective.
“We have a lot of treatments now for the relapsing form of MS in Australia, and most of them are subsidised on the Pharmaceutical Benefits Scheme.”
For Karin, treatments include swimming — which is low impact on her joints — and yoga.
Common MS treatments in Australia include immunotherapies, which work by modifying the activity of the immune system to slow the frequency and severity of attacks to the central nervous system.
Corticosteroid medication is also prescribed, which is used to reduce symptoms from an acute flare up easing inflammation at the affected site.
