In Search of the Truth. The long road to diagnosis

Media Release – For Immediate Release – 3 September 2015

In Search of the Truth. The long road to diagnosis

For many the story of how they were diagnosed with Multiple Sclerosis is one that they will never forget. A large part of that is due to the often long process they go through, misdiagnosis, treatment of symptoms, repeated visits to health professionals and a scary unknown journey.

For Rochelle Benton this was very much the case. The 26 year old mum of two was 19 at the time and working abroad, like many young Kiwis on their OE at Camp America. “One night, after being at a seafood barbecue, I started getting tingling in the right side of my face, my left hand and right foot,” explained Benton. “My first thought was that I had reacted to the seafood, which had never happened before. I decided to have an early night and hoped it would be gone in the morning.”

However three days later the tingling was still there. And so began the process. “I had a bad cold a couple weeks earlier and the doctors in America told me I had glandular fever. However, when I arrived back in NZ the tingling was still there so went to my local GP. He was great. After describing what I was feeling he said it could be Multiple Sclerosis so referred me to Neurologist for further test,” recounted Benton. Long story short, following an MRI and painful lumbar puncture the diagnosis was confirmed.

For people with Multiple Sclerosis, a chronic neurological condition of the central nervous system, this misdiagnosis and long process is not unusual. The UK MS Society released data in May 2015 which showed that from 1,515 people surveyed; 81% were misdiagnosed by their GP, 1 in 4 said they visited their GP over 4 times before they were referred to a Neurologist, 4 in 10 waited more than a year for a correct diagnosis, 28% were told they had a trapped nerve and other misdiagnoses includes depression, anxiety or stress (14%) and stroke 11%.

Like Benton numbness and altered sensations were reported by 53% as their first initial symptom, visual changes (47%), difficulty walking (41%), fatigue (38%). “These figures demonstrate the need for a greater awareness among GPs and the general public. Misdiagnosis and an extended process have a huge impact on a person’s well being, emotionally and physically. Early diagnosis means the condition, not just the symptom can be managed better and hopefully treated,” commented Multiple Sclerosis New Zealand National Manager Amanda Keefe. “We were able to get two new treatments funded last year and open access for those currently funded. Studies show that early access to treatments slows disability, irreparable damage and disease progression.”

Now, six years on, an extremely supportive fiancé and two happy kids later Benton says, “Life is pretty good now.” Benton puts this down to the Copaxone treatment she is taking “I believe it is the only reason I’m where I am today. There have been times I've not known who I am or where I am but I'm past those bad times!”

Over 4000 New Zealanders are diagnosed with MS. Multiple Sclerosis Awareness Week takes place this week until Saturday 5th September. Please consider supporting MS Organisations to provide support and services to those affected by donating to the regional street collectors or online atwww.msnz.org.nz. Or Vodafone customers can Txt2Give, simply txt MSNZ to 7003 to donate $3, 7005 ($5) and 7010 ($10).

MSNZ would like to thank Pub Charity, BNZ and Health Life Media Ltd for their support

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