Someone who knows about the importance of an early diagnosis is Deb. Unfortunately for Deb, she didn’t get one.
Deb’s symptoms started appearing when she was in her teens, as she began to struggle with incontinence — something she now admits she was too embarrassed to talk to anyone about at the time.
Then in 1980, she started suffering bouts of fatigue, so much so that she needed time off from school.
Four years later, during a netball match, she lost all feeling in her right leg and was rushed to hospital. The medical team there performed a series of scans, but were unable to identify the cause of the issue.
A year after meeting her late husband — who lived with a disability himself — Deb started experiencing difficulties with her vision, which led to her being signed off work for more than a fortnight.
“I can remember my husband and I walking to the doctor. We must have looked so weird, because I was hanging onto his shoulder as I stumbled across the road. I couldn't see anything. They didn't do any further exploration at that time. And I rested for two weeks. Then bingo, I was fine again. So you forget about it and you go on.” remembers Deb.
In 1992, a clicking knee led to Deb being referred to a neurologist, who investigated a potential arthritis diagnosis.
“It took months to get an appointment. Then I remember being hooked up to machines with a bunch of electrodes on my head. The results came back as normal, and I started thinking the problem was that there was something wrong with my mind.” recalls Deb.
In 1995, Deb and husband had a baby boy. Then a year later, whilst working as a teacher, her leg gave way again.
“I started seeing a physio. I was able to do the exercises she asked me to do, but still ended up limping out of each session. I found out later that she told my GP that she thought I was faking it.” recalls Deb.
An uncomfortable theme began to emerge. Not only did Deb have to deal with her symptoms, but also the sense of mutual distrust these experiences created between herself and the medical professionals who were supposed to help.
In 1997, after years spent questioning her own sanity, Deb finally received her diagnosis.
“I felt strangely happy that my symptoms had a cause beyond me losing my mind,” recalls Deb, “my husband, who was in hospital himself at the time for kidney stones just said we would work through it. And we did.”
Without better diagnostic tools, people can endure years of uncertainty, unnecessary treatments, and miss out on an early intervention. A misdiagnosis can mean taking the wrong medication with serious side effects, while a delayed diagnosis can result in irreversible damage.
Without research into better diagnostic methods, this cycle will only continue. The care that changes lives is only available with a diagnosis that clarifies need. With an early diagnosis it is possible for MS Plus to provide meaningful medical support, therapies and other treatments that help ease the burden of MS as soon as possible.
Someone who’s passionate about finding new ways of diagnosing MS early is Dr Lin. He and his team of researchers are working tirelessly to minimise the impact MS has on those it affects. Putting time on their side, and giving them back what this awful disease takes away.
“The average time from onset of symptoms to MS diagnosis is nearly four years. We're getting better, but four years is still a long time.” says Dr Lin.
Dr Lin’s work focuses on developing biological markers for MS, aiming to create a faster, more reliable diagnostic process.
”One of the big challenges that remains is that we still don't have a good set of blood-based markers for MS. Blood samples are less invasive and more clinically accessible. The current process of diagnosing MS remains time-consuming and it presents a barrier to treating MS from the earliest stages.” says Dr Lin.
Dr Lin and his team are working on a way to diagnose MS via a blood test. And if they’re successful, doctors will be able to identify MS much sooner and with greater accuracy, ensuring people receive the right treatment earlier, improving outcomes and enhancing quality of life.
Unfortunately, there’s nothing either of us can do to help Deb get back what MS has taken from her over the years. But, we can make sure that fewer people face the indignity and frustration of misdiagnosis. Your generosity means researchers can spend more hours in the lab. And those hours will one day create a solution that puts time on the side of everyone living with MS.