When my body went numb

These headings are not exactly catchy are they? And I know I said I didn’t want to list my ailments like an old soldier, but I think it’s worth talking about. I mean if I’ve set myself a public target of climbing the Alpe D’Huez, you should be aware of the barriers that make that a real challenge. Nobody is more irritating than the bloke in the office who signs up for an Etape when he’s drunk, borrows his Gran’s old pushbike, and saunters over the summit after a week’s training riding to Tesco and back.I am not that man.

When I present myself for clinical examination the first thing they ask is whether I have any significant medical history they should be aware of. I enjoy this it – I tell them I’ve had a case of transverse myelitis and sit back to witness their reaction. Depending on the specific interest of the health professional in question, the reaction varies from complete ignorance, to seen-it-all-before insouciance, and barely disguised glee from the strange people who are particularly interested in this sort of thing. Those people are usually physios.

I was unloading a lorry on a cold morning outside Birmingham Hippodrome in 1993 when suddenly and unexpectedly my toes went numb. Gradually over the next few hours my back began to ache and I had a tingling sensation in both my legs. I visited the General Manager of my employer, Welsh National Opera, who gave me an irritated lecture on proper lifting technique and reluctantly sent me home to Cardiff to recover from what seemed a self-inflicted injury.

But I didn’t recover, I got worse. The numbness gradually rose and kept on going until every part of my body below the trunk was semi-paralysed. It was numb, painful and my legs felt like lead. I went to see my GP who diagnosed a trapped nerve and sent me away. I went back to see the GP several times as the symptoms got worse. Within a fortnight, I was incontinent, impotent and walking on crutches my student friends had borrowed from the hospital. Finally I was referred to a neurologist at the Heath.

The neurologist booked me an MRI scan and after a long wait, I caught a bus to the hospital in some trepidation. I had good reason to be scared – that MRI scan was the single worst experience of my life. I didn’t realise that I was claustrophobic until I was placed on a conveyor belt and slid into the bowels of that noisy, clanking, metallic tomb.

The worse thing about that MRI scan is that people leave the room and shut the door. You’re on your own, with a small button in the palm of your hand which you are meant to press if you need to come out. But could you trust them? Would they come? How long would they take? I was dreading the moment that belt I was lying on would slide into that narrow tunnel. but not to worry, first they would be injecting my spine with gallons of blue dye. And then they turned on the Phil Collins CD.

I kept my eyes closed, but I could feel the hard plastic of the machine touching my stomach, arms and thighs as I was completely enveloped in that monstrous invention. And then after about ten minutes of forced mental relaxation and mind-divertion, I opened my eyes. I don’t know why, but I know that I will always regret making that decision. The internal walls of that capsule were less than six inches away. I was in a medical coffin and I started to panic.

At first I hyperventilated, I couldn’t breathe – my body became tense and I started to sweat profusely. The button! Press the button! But I felt stupid – lot’s of people have these scans- man up and deal with it. I took my mind away, and I started to have a sort of out-of-body experience – I was on a desert island, which is weird because I hate the sun.

Then after an eternity (well, 30 minutes), came the message through a tinny speaker in the room – “That’s it Mr Stead, we will now be popping you out.” ……..aaaand breathe…relax. Phew! That was over. I felt the cool air of the room on my body and the anticipation of freedom was intense. But then the belt stopped, the door opened and my upper body was still entombed. “We just need to inject some more dye, and pop you back in”. Reader, I will leave you to ponder that moment, and feel my pain.

Some time later I was called in to a private room at the hospital where a Doctor confirmed that they had detected a patch of myelitis at the base of my spine. The spine is the conduit for a load of nerves which control some important stuff, like arms and legs and things. These nerves are so important that the body has developed a coating of fatty insulation called myelin which protects the nerve cells from damage. That’s why the damage of that coating is called myelitis. My insulation had gone – attacked by an inflammation which cut across, or transversed the spinal chord – which is why is called transverse myelitis. The Doctor explained that I had suffered a singular sclerosis. If it happened again, which was entirely possible, then it would be a mutliple sclerosis. You see what he was getting at?

Thankfully, that second attack has never happened, though for the first five years, every tingle, every twitch,  every numb bum from sitting on the bog too long would send me into a mild panic. But let’s not get too dramatic here, I’ve been sclerosis free for 18 years – it would have happened by now. (Let’s hope that glib assumption doesn’t induce the commentator’s curse).

The myelitis had some worrying effects. I couldn’t sit down any more. I would fall straight from a standing position to collapsing with no dignity onto a chair. I needed to retrain my body in some simple tasks like this. I remember being paraded as a physiological curiosity, with 20 lovely young female physios running their hands all over my semi-naked body as they examined the physical toll that the episode had taken. Yes, I remember that more often than is healthy. Excuse me…cough.

My feet were numb for quite a while, and they still haven’t recovered fully. My legs feel heavy and I have trouble standing for long periods without getting uncomfortable. There are other areas which still have reduced sensitivity and performance, though I should point out that I have three children, all born since 2000, so some things still work reasonably effectively.

Nonetheless, many medics are very surprised at the recovery I made. I had to stop running and playing football competitively, but I was more comfortable on the bike, and a 75 mile training session over the hills of south Wales was no real problem. I do wonder if it was the myelitis which stopped me progressing beyond that though. Once I got up to 100 miles, my spine became extremely stiff, my feet cramped, and my legs were so heavy that I could barely spin the pedals. I’ve got no reason to think that will ever improve – but we’ll soon find out. There’s just one more thing that needs to be treated before I can even step back on the exercise bike – and that needs another MRI scan. Gulp!








About 2clots

47-year old Welsh cyclist. I suffered a dual pulmonary embolism in March 2011, following an attack of transverse myelinitis in 1994. Apart from that, I'm fine. Author of Red Dragons: The Story of Welsh Football.
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3 Responses to When my body went numb

  1. Tracey says:

    My consultant mentioned me having an MRI, but “you’d need to drink litres of foul-tasting stuff, without throwing up or wetting yourself – oh, and it’s the nearest thing to being in a coffin.”
    Strangely enough, I passed on his offer.

    Colonoscopy, with 6 foot of cable and a camera on the end up your bum? No problem.
    MRI? – not in a billion years!

  2. Gwyn Wms says:

    I signed up for an Etap, but found it was a cheap hotel in Cardiff !

  3. Muhz says:

    Well described Phil. The MRI experience is awful, and I took myself off to a desert island too after opening my eyes briefly. Did you see the message I left in a bottle for you?

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