How I missed my body’s MS clues

Award-winning author Robert Douglas-Fairhurst has published a memoir of his life in which he was diagnosed with multiple sclerosis. In this extract from his new book, he looks back at the multiple sclerosis clues his body presented him with which he failed to pay attention to.

MS symptoms

Armed with a reading list from a university colleague, and determined to find out more about the disease that within a few weeks had squashed my life into an entirely new shape, I set out to investigate the secrets that my body had been keeping from me.

It turned out they weren’t really secrets at all, it was just that I hadn’t paid enough attention to various early 44 warning signals to recognise them as symptoms. Not only had I been feeling heavy-legged after long walks, I had also felt unusually weak after hot baths, caused by the impaired ability of my demyelinated nerves to conduct electrical impulses after a rise in my body’s core temperature. (The medical term for this is ‘Uhthoff’s phenomenon’, named after the ophthalmologist Wilhelm Uhthoff, who noticed in 1890 a temporary worsening of vision in patients with optic neuritis after they had taken exercise.)

Lhermitte’s sign

From the previous year, I also recalled an electrical current that had seemed to buzz down my spine whenever I bent my neck downwards, known as ‘Lhermitte’s sign’ after the French physician Jean Lhermitte, who published his findings on this symptom in 1924. In fact, putting all these clues together, it appeared that my body had been quietly attacking itself for a while, as tiny troops hit my communications and supply lines, gradually cutting off the flow of information that was carried by my nerves and causing them to misfire.

But that wasn’t how I’d interpreted them at the time. Instead, I’d filed them away in a drawer in my brain marked ‘Bodies Do The Strangest Things’, like unprovoked nosebleeds or your teeth chattering when you’re cold, and assumed that I’d never need to open it again.

There was also another factor involved in my overall lack of awareness – I simply wasn’t used to paying that much attention to my body. These days it’s common advice to ‘listen to your body’, and it’s rooted in far older ideas – in the seventeenth century the English physician William Harvey described physical movement as ‘the silent music of the body’ – but for most of my adult life mine could have been honking like a goose or singing ‘La Cucaracha’ for all the notice I usually took of it.

Trying in vain

That’s not to say I was lacking in vanity. I could spend as long as anyone trying to get the angles and lighting just right for a photograph that would hopefully look spontaneous and natural, or stare gloomily in the mirror at a spot on my face and convince myself that I had grown an extra nose overnight.

But none of that seemed to have much to do with the hidden network of nerves and blood vessels that allowed everything else to function. My body was a box that needed to be regularly filled with food and wrapped in clothing that hopefully wouldn’t cause small children to point and laugh at me in the street, but it wasn’t really me.

The other main problem I experienced when looking back at my hazy range of early symptoms was trying to see them all as elements in a single process. In part, that’s because we usually treat our physical experiences in isolation from each other. If we suffer a headache, we are likely to locate it primarily in our head rather than in our central nervous system. If we stub our toe against a door, we quickly make the connection between the part of our body that has just smashed into a wooden object and the burst of pain that causes us to yelp and curse.

We also tend to see each event as a particular problem that requires a particular solution – paracetamol for a headache, or some soothing ointment and a bandage for a wounded toe. Only now did I understand that my heavy legs, buzzing spine, and so on, were all pieces of the same jigsaw puzzle – although that made it sound as if MS was a fixed pattern, whereas what I was starting to realise was that my symptoms were far more like the individual parts of a developing story.

Metamorphosis, A Life in Pieces by Robert Douglas-Fairhurst is on sale this month and published by Penguin Books

This article appeared in New Pathways magazine, the publication of choice for everyone with MS. To find out more, click the button below.