30 May 2024

Sarah Flaim

My diagnosis brought relief

At least it’s not a brain tumour…” 

I vividly recall Christmas Eve 2013. Three excited kids. Check. Three stockings beside beds. Check. One tingly left arm. Whoa, what’s that about!? One sleepless night due to frantic worrying about early onset cardiac disease. One trip to the emergency room. One cursory work-up by an under-enthused EMT registrar who diagnosed ‘stress’. And finally, one very delayed Christmas dinner, comforted by the notion there was no imminent chance of the aforementioned heart attack.  

Whew, I thought, I’ve dodged a bullet. Oh my, how wrong I was. 

Over the next months the sensory symptoms didn’t abate and were compounded by neuromuscular pain and a relentless accompanying fatigue. Desperate for some indicator of what was causing these symptoms, I engaged with several medical specialists and was launched into an abyss of medical prodding and probing, investigations and interrogations.  

As I began that free fall into what would become a seemingly endless onslaught of specialist appointments, each resulting in ever increasing emotional turmoil and generating far more questions than answers, I had no idea that it would take an epic 12 months to land on the solid ground of a definite diagnosis. 

Blood tests, MRIs, a lumbar puncture, and nerve conduction tests—all yielded bafflingly inconclusive results. An increasingly varied suite of theoretical potential diagnoses – spanning the gamut from a brain tumour to schizophrenia, lupus to syphilis – were all explored and systematically ruled out.  

Months went by and I remained in a sort of medical purgatory – euphemistically referred to by my doctors as ‘it could be nothing’. Because even though MS remained defiantly on the list of not-yet-excluded hypotheses, one demyelination attack does not equate definitionally to the multiple that MS draws its name from.   

And yet, although I was ‘clearly not fine’, I was also ‘not visibly unwell’ either. Things settled down for a few months until another relapse and then after yet another MRI (I was half-expecting the kitchen cutlery to start sticking to me). After delving into yet more diagnostic rabbit holes, I was finally, at the age of 34, proclaimed to have MS.  

And with the diagnosis came relief – an end to the disquieting uncertainty of ‘what is wrong with me?’ – and the promise of disease-modifying therapies to stall neurodegeneration. 

Fast-forward ten years to now, and I’m living comfortably without major disabilities, under the care of a neurologist I trust. It was without a doubt a rocky road to diagnosis, but I consider myself fortunate that it was caught relatively early, and I’ve experienced no major relapses. My hope is that with the improvements over the years in technology and training, others may experience a much less fraught diagnosis journey.  

Sarah Flaim is a member of the Lived Experience Expert Panel (LEEP), which brings a wide range of lived experience and expertise to the work of MS Australia. Read more about the LEEP 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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Sarah Flaim