If life’s a party, please can I change the music?


Three months post-diagnosis – at last, a consultant’s appointment

A patient walks into the doctors.

“Tell it to me straight, Doc,” he says. “No sugar coating.”

The doctor proceeds to tell him the grave seriousness of his condition.

Struggling to digest this latest news, the patient laments, “What I meant was: ‘convince me you’re going to tell the truth, but then just tell me what I want to hear….'”


[“THE TRUTH?” Jack Nicholson barks, “YOU CAN’T HANDLE THE TRUTH!”]


This week I had my first appointment with a neurological consultant – and we talked about where I am and what the next steps should be.

We discussed my symptoms and he explained the results of my MRI scans.

A lesion (or scar) on the brain or spinal cord, coupled with ‘MS symptoms’, would be enough to trigger an MS diagnosis. Scars on the spinal cord, opposed to the brain, tend (“tend”, but not always) to be warning signs of a more aggressive form of the condition. Their number, and size, are (very) rough barometers of the extent to which the condition has taken hold.

I have 6 lesions on my spinal cord, and 3 in my brain.

No areas of the MS condition are black and white… but, coupled with my symptoms, this is not great news – and enough to categorise my condition as being at the more aggressive end of the MS spectrum.

So it’s now all about next steps. Drug decisions and new chemical names: Lemtrada; Tysabri; or Tecfidera. Blood transfusions and time off work. Stronger drugs weighed up against stronger side effects. Some so strong they could kill you. So strong that their initial doses change your immune system for good.

The consultant’s advice was to get started on a drug program as soon as possible… but then followed that up with the news that my next follow up appointment, drug decision and, eventually, prescription, would not be for another month or so. These extra days are just drips in time, but are frustrating hours and minutes passing with the impatience of some one keen to get started.

The drugs that ultimately (at least, hopefully) I will be taking did not exist 8 years ago. A decade ago I might well have been in a wheelchair within 2-5 years. Now? I might still be. Whatever drugs I end up taking need to do their work.

I asked the consultant what else I could do. Whether I should maintain the MS diet that I’m pursuing.

He paused for awhile and gave me a considered response. “I advise that you try as hard as you can to be happy. Do not let your condition run your life.”

And cycling?

“Happiness, you’ll find, is the best medicine.”

I arrived and left my appointment in my cycling gear – having ridden from work. But I also had to pigeon-step in and out of the hospital as I struggled with that most basic of functions.

On my commute home I suffered a rear wheel puncture. “How annoying”, I thought.


One thought on “If life’s a party, please can I change the music?

  1. I’ve been off the bike for 18 months with knee then hip problems until recently, just getting started again myself at a very low level but appreciate the strength of desire to keep on cycling that comes across in your blogs. I know next to nothing about MS other than what I’ve read from you and life certainly isn’t fair in dealing out these things but the audax ability to endure whatever the road throws at you next and keep going somehow and come back for more another day has got to be a help. A great read and all the best with your battle.


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