28 May 2024

Amanda Kennedy

The silent language of MS

Amanda Kennedy was just 31 when MS made its abrupt entrance into her life. Here is her story.

My first symptom was a hot sensation around my right knee followed by an altered sensation in the back of my right thigh. Then came the pins and needles from my waist down.   

When these symptoms had not improved a week later, I saw a GP who immediately suspected I might have MS. He gave me a referral and sent me to the Emergency Department, with the intention of seeing a neurologist straight away.   

The doctors in the Emergency Department brushed off my symptoms, disbelieving that MS could be the culprit. MRI? Not unless it was a life-or-death situation, they said. Apparently, I didn’t qualify. So, I endured six long weeks of uncertainty before finally getting a brain MRI as an outpatient.  

The results were telling—multiple lesions decorating my brain, a silent language of MS that no one bothered to translate for me. However, no one contacted me with the results or followed up.   

It took three more months, and a return visit to my GP with a resurgence of pins and needles, before anyone bothered to inform me of the diagnosis. A spine MRI and a blood test followed, each adding weight to the confirmation of what I already knew in my gut.  

Based upon the results of the two MRI’s I was referred to a neurologist who finally provided my diagnosis – four months after the onset of my first symptoms.   

Promises of lumbar punctures and treatment before Christmas fell by the wayside, replaced by a frustrating four-month wait until late February. Meanwhile, another relapse wreaked havoc, rendering my right side numb and an inability to control the movement of my left eye and severe double vision.   

Getting continued access to treatment has also been challenging.   

The prescribed monthly infusion tied me to the hospital, demanding precious hours I couldn’t spare. With a full-time job, the rigidity of appointment times during work hours made it very difficult to attend treatment appointments. So, I made the decision to change my treatment to a monthly injection I can administer myself at home to keep my work life intact.   

Before my diagnosis, MS was just a distant concept, a few pages in a childhood readathon. Wheelchairs and uncertainty—those were the images it conjured. But now, I see it differently. I have no family history of MS, and before MS, I didn’t think that I knew anyone who had it. Since my diagnosis, I’ve discovered that MS isn’t always visible. I did in fact know people with MS, however, they had kept it hidden out of fear of being judged in the workplace.   

While my journey with MS has been fraught with challenges, it’s also been a lesson in resilience and the power of adaptation.   

Amanda Kennedy is part of the MS Australia National Advocates Program, which promotes the active involvement of people living with MS and carers of people living with MS in the MS Australia advocacy agenda. Read more about Amanda’s experience here.

World MS Day, acknowledged on May 30, is a day that fosters global unity and optimism. The 2024-2025 theme ‘Diagnosis’ and ‘My MS Diagnosis’ campaign, advocates for timely and accurate identification of multiple sclerosis (MS). The campaign shares real experiences and urges improved healthcare professional training, research, and clinical progress for MS diagnosis.  

World MS Day is an opportunity to share stories, like this one, raise awareness and campaign with everyone affected by MS.  #MyMSDiagnosis. 

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Amanda Kennedy