Man diagnosed with rare, incurable disorder after struggling to give a thumbs up

Clive Philips was alarmed when he found it difficult to give a thumbs-up to a colleague, which eventually led to his diagnosis of multifocal motor neuropathy (MMN) in December 2019 (Representative image: Pexels)

Little did Clive Philips, a former soldier, know that not being able to give a thumbs up, considered a simple gesture, would have a cause as grave as a rare, incurable neurological disorder. Originally from Birmingham, he moved to New Zealand with his wife Ann after they got married in December, 2010.

While he considered himself healthy and fit, indulging in outdoor activities such as mountaineering, walking and cycling, his “unusual” symptoms first began in 2013 when he was in his late 30s. Initially, he ignored the subtle hints that came in the form of losing muscle grip, struggling with buttons, and trouble with lifting bags.

“The first thing I remember was trying to hold a knife and fork and my hand shaking,” he said. “I must admit at the time, shaking of the hands just brought Parkinson’s disease to mind, but it wasn’t that obvious, so I put it to the back of my mind.”

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However, the alarm bell rang when he found it difficult to give a thumbs-up to a colleague, which eventually led to his diagnosis of multifocal motor neuropathy (MMN) in December 2019.

MMN is a rare, incurable neurological condition which impacts motor function.

Speaking about the moment, Mr Phillips said: “I was walking down the corridor at work and trying to give someone a thumbs up with my left hand, the most natural action in the world, and I couldn’t do it.”

“I’m going ‘hang on a minute, I can’t do that’, and that was the moment when I realised that this isn’t normal. I was almost looking at my hand, willing it to do things, so that was the moment when I thought I needed to see a doctor… and the rest is history.”

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Phillips began monthly intravenous immunoglobulin (IVIg) therapy, the only FDA-approved treatment for MMN, a disease which affects only about 0.6 in 100,000 people. By Christmas Eve, he managed to give his wife a thumbs up.

Now employed in healthcare, Clive’s condition is stable with regular treatment. However, he still struggles with persistent symptoms such as muscle wastage and reduced motor control. The National Institutes of Health states that it typically takes over six years to obtain a correct diagnosis for MMN; and Clive shared that the symptoms are often confused with motor neurone disease (MND), a fatal condition.

After being diagnosed, 50-year-old Clive started his social enterprise, Making the Most of Now, to raise awareness of the condition and amplify patients’ voices. He also resumed cycling, a lifelong passion, using challenging rides to fund MMN research—particularly a 22-day journey in June that retraced the route of the first British Tour de France team.

Disclaimer: This article, including health and fitness advice, only provides generic information. Don’t treat it as a substitute for qualified medical opinion. Always consult a specialist for specific health diagnosis.