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.”
“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.