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Diagnosis - time matters in MS

Catherine and Emily
8 September 2020
Whilst advances in health technologies mean the ability to diagnose MS is better than ever, unfortunately MS diagnosis is often delayed.
One major reason is that many women (and men) don’t join the dots around their health niggles. Furthermore, and significantly, as MS symptoms vary so drastically (and because many are invisible) and people experience them in different ways, it can be a hard condition to diagnose.
 

Catherine Brooks (pictured on the left) is a successful corporate lawyer, writer, mum to two young kids and lives with multiple sclerosis (MS). Here she recounts when she first became aware that something wasn’t right.

“When I experienced my first MS attack, I was 23. I was super fit, spending a lot of time at the gym and going on hour-long beach walks every night,” she recalls. “On one such walk, I noticed that I had pins and needles in my feet. That night, the sensation moved up my legs and by the next morning I was feeling very strange.

“I went off to the local GP who said I’d probably pinched a nerve during a weight session and told me to take vitamins.”

But then, things took a turn for the worse.

“The next day I couldn’t feel anything from the waist down, and I had severe spasticity in my legs, so my GP rushed me into the St Vincent’s hospital neurology clinic where I was promptly admitted to emergency for further testing,” says Catherine.

These further tests led to a diagnosis of MS.

Early diagnosis of multiple sclerosis can make a huge difference in terms of treatment and management.

Champion cyclist and MS advocate Emily Petricola, who has enjoyed a brilliant career as a Paralympian, had a different experience to Catherine and was diagnosed quickly with MS.

“My doctor sent me straight to a neurologist who found a big lesion across my C2 and C3 spine,” Emily recalls. “When they told me multiple sclerosis was one of the possibilities, my stomach sank and I knew that was what it would be. It was an intuition.”

Catherine and Emily want to urge women and girls to get their niggles checked out. It’s important to remember that any health concerns, no matter how small, are worth investigating!

Like Catherine, Emily has learnt how to balance the challenge of living with MS with success in work and life. Emily’s swift diagnosis is the optimum ‘diagnosis experience’, as this enables the opportunity for appropriate treatment options and a management plan that will maximise brain health.

“I was lucky in that the diagnosis was quick. People with MS can go a long time before they get diagnosed and many get misdiagnosed to begin with because the symptoms can be so transient,” she says. “When they looked at my brain and spinal MRIs and found lesions in both, combined with other results from a lumbar puncture, the diagnosis was swiftly made.”
 

MS Australia is a Women’s Health Week 2020 Community Partner

MS can be hard to diagnose and sadly Catherine had a less-than-ideal experience (all too common we hear) seeking professional help about her health concern.

We know that early diagnosis leads to early treatment and less brain volume loss. So, early intervention maximises lifelong brain health. Access to an early and accurate diagnosis, based on best-practice evidence and expert medical opinion, including access to specialist clinical services, ensures that people with MS receive the right care, at the right time, by the right team in the right place.

We also know that there is a high prevalence of women with MS; roughly 75% of people diagnosed are women. Also, MS is mostly diagnosed at an age when many women are focusing on a career or having a family, so the importance of listening to your body, noticing changes and seeking medical support is paramount.

With health issues such as COVID-19 placing stress on our lives, it’s important we don’t overlook our overall health and wellbeing.

This Women’s Health Week we urge everyone to check it. Don’t regret it!
 

The Brain Health: time matters in multiple sclerosis report, refers to the critical fact that early diagnosis maximises brain health. Early diagnosis also equates to empowerment, as it can lead to the many practical resources, services and approaches, to help manage living with the condition.

Significantly, the report also states that, “Even in the early stages of MS, cognition, emotional well-being, quality of life, day-to-day activities and ability to work can be markedly affected by the damage occurring in the brain and spinal cord.” (Page 9)

The Brain Health: time Matters in MS report (page 24) says that many people with early MS, “already experience brain atrophy more rapidly than the general population. This loss of brain tissue is often subclinical (not accompanied by clinical symptoms), owing to repair mechanisms in the central nervous system and neurological reserve that enable the brain to reorganize itself and reroute pathways to avoid damaged areas, even when repair is incomplete. If the brain were not so flexible, clinical symptoms of MS would become apparent sooner; this remarkable ability to compensate means that ongoing damage may go unrecognized until neurological reserve has deteriorated significantly”.

Time really does matter in MS!


To read the Brain Health: Time Matters in MS report in full, please visit: https://www.msbrainhealth.org/report

The MS Brain Health website includes other helpful resources, such as the Brain Health Guide for People Living with MS. Please visit: https://www.msbrainhealth.org/resources/for-people-with-ms
 

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  • With much gratitude to Catherine Brooks and Emily Petricola for permission to republish their stories.
  • Catherine Brooks first recounted her story to MS Australia in 2016: https://bit.ly/3axN2TT
  • Emily Petricola first recounted her story in 2019 in Athlete’s Voice. A link is on the MS Australia website here: https://bit.ly/3auNDpy

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