The evolution of Ciara’s MS 2008 to 2010
May 2008: Three days of double vision, dizziness & infrequent loss of balance.
Diagnosis: Vertigo & Diplopia caused by exam stress and excessive laptop use coming up to college deadlines.
Treatment: Course of Stemetil (used to treat balance problems or dizziness) and a referral to the ophthalmologist for eye test and glasses.
Multiple Sclerosis Diagnosis: Not even on the radar.
September 2008: Shortness of breath, productive cough, fever and on a second course of antibiotics.
Diagnosis: A respiratory tract infection after 3 months on a J1 Visa in Hawaii.
Treatment: Third and final round of antibiotics.
Multiple Sclerosis Diagnosis: Still not on the radar
November 8th 2008: Woke with right sided numbness and pins and needles, from chest to toes, full power, full reflex ability but no feeling.
Diagnosis: Initially considered a hypochondriac by the admitting registrar in A&E.
Treatment: An eye roll, a look of disbelief. Hospital admission and a reluctant referral for an MRI.
Multiple Sclerosis Diagnosis: Too focused on the notion of health anxiety to consider any other explanation.
November 9th 2008: Symptoms remain the same.
Diagnosis: Now we are moving to consider Gillian-Barré Syndrome.
Treatment: MRI and an apology from the admitting registrar.
Multiple Sclerosis Diagnosis: We have slid onto the radar and entered the realm of nerve damage. Getting there, but a good bit away yet.
November 10th 2008: Symptoms remain the same – no better or no worse.
Diagnosis: ‘We think you have Multiple Sclerosis’.
Treatment: Still awaiting an MRI.
Multiple Sclerosis Diagnosis: We are on the radar now but without an ounce of supporting evidence -no MRI result, no lumbar puncture, no previous relapse.
December 1st 2008: Symptoms have long since subsided.
Diagnosis: Likely a trapped nerve.
Treatment: Physio & Chiropractor.
Multiple Sclerosis Diagnosis: What? Ah that’s long off the radar now again – sure it was only a trapped nerve.
June 2009: Neurology Outpatient Appointment: No symptoms, no further episodes, flying it.
Diagnosis: MRI showed a small lesion – likely a clinically isolated syndrome.
Treatment: Come back to use in a year – stay doing what you’re doing.
Multiple Sclerosis Diagnosis: In the words of the neurologist ‘ no supporting evidence for a diagnosis of MS’.
June 15th 2010: Neurology outpatient appointment brought forward after annual MRI.
Diagnosis: Demyelination of the spinal cord – conclusive to a diagnosis of Multiple Sclerosis.
Treatment: Take home these 20 books and decide what disease modifying therapy you want to start.
Multiple Sclerosis Diagnosis
We have found our target location – no avoiding this one.
The concept of evolution is central to the world we live in – we evolve as humans, treatments evolve, disease causing organisms evolve. Being aware of this process of evolution can make a big difference in how we treat disease. We are now recognising the concept of smouldering MS (constant progression) and the importance of regular monitoring. We are calling out medical gaslighting and engaging with health care professionals about what treatment options work for us, not what works best for them. This has all come about through evolution, through change and advancements. Compared to many others, my evolution of MS was quite short – but it needs to be much shorter for those coming up on the MS potential radar.
When it comes to light that it is actually MS and not something else, do we need to listen to those that say – it could have been worse? Absolutely not. Somewhere there is someone being told to look on the bright side, at least it wasn’t MS. We all have our own mountains to climb – mine just happens to be the one with the MS peak.
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