A Kind of Relief

I waited for the leaden thump to land in my belly. I hadn’t expected a Jaws-style dolly-zoom or sombre pizzicato strings to pluck out a funeral march.

But, as the consultant neurologist pressed on like a character in a movie, I was powerless to pause or rewind and murmured the words, “… It is MS. The next conversation we’d need to have is about prognosis…”, I certainly hadn’t banked on feeling something like relief.

Three years on, I’m still not sure if I fully understand why that mushroom cloud of euphoria had erupted behind my navel, nor why it felt like slipping into a comfortingly warm bath as it spread to my limbs and dissipated. But, as it did, I could feel 8 months’ worth of tension soothe across the coat-hangar triangle between the base of my neck and shoulder blades.

I was wondering which type of MS it would be

My lack of naivety to the subject is one of the reasons I find my reaction so puzzling. Even at this early stage, I knew enough about MS to know that my diagnostic options would either be RRMS or PPMS.

It’s not like either option was particularly welcome to me. As I sat there in a surprisingly uncomfortable chair for the office of a consultant who meets daily with people in chronic pain, my logical brain continued to poke me in the ribs and hiss in my ear, “Why on Earth are you relieved? This is not good news.”

I’ve since tried to rationalize my feelings of relief in a couple of ways. One factor, I’m sure, is that this was partly an emotional release after an 8-month crescendo of stress, anxiety, depression, and attempting to self-manage an as-yet undiagnosed so-called clinically isolated syndrome (CIS).

One morning in May 2020, I had awoken and something was wrong. Actually, many things were wrong. I vividly recall one clumsy, clouded thought bumping into the walls of my cranium as it tried to support itself into my inner monologue, “This is like it was before. Only worse”. After all, something like this had happened once before in 2013. At the time, I was assessed by a neurologist, who diagnosed a Functional Neurological Disorder and promised this would clear up. And, in fact, it did clear up after a few months and I spent the remaining 7 years in blissful ignorance.

The morning that changed everything

But on this particular morning, reality rushed up to meet me like solid concrete after a slip from Cloud 9. Both of my hands felt as if they were covered by thick, rubber gloves, hampering my dexterity and ability to sense my grip. Throughout the day I broke two drinking glasses and a mug. I dropped the mug, and squeezed the drinking glasses too hard, shattering them. I had absolutely no sensation whatsoever in my abdomen and groin.
My right leg would drag behind me clumsily and I’d be knocking into walls as I tried to navigate the house.

As an avid guitarist, this was incredibly difficult to cope with. I couldn't coordinate my fingers to play. They would clumsily thump and paw at the fretboard as if I were wearing mittens.

Sporadically, in waves of about 20 minutes apiece, a crushing, vice-like grip would band around my thoracic region. I’ve since learned that this symptom is colloquially referred to as the MS-hug, which is possibly the most ironic misnaming of a medical sign I’ve ever come across. Unless, of course, you know someone in your life who hugs with the intent to cause intense physical pain. I often argue that we should immediately rename the MS-hug, “The MS Rubber Ring of Torturous Anguish”. It hasn’t caught on yet. I would also experience (every day without remission) an electrical sensation which would shoot from the nape of my neck, down my spine and into my feet every single time I touched my chin to my chest – Lhermitte’s Sign.

As a postgraduate of Cognitive Sciences, I had been back-and-forth to the GP citing my worries that these neurological symptoms were more significant than the current go-to diagnosis of FND (functional neurological disorder) for generalised symptoms. The GP would organize bloodwork, find nothing and send me packing.

Consequently, I would be going into work, where I support young people with autistic spectrum conditions and history of trauma, who present severely challenging behaviour, and working through it, taking any spare moment I could find (which were few and far between), to lay on the floor as the fresh waves of MS-hug caught hold of my midriff and all I could do was breathe through it. This cycle went on for the remainder of the year, until I finally spoke with a GP who had some specialized interest in neurology.

I needed to get a plan in place

I don’t blame the healthcare system for this at all. After all, the diagnostic process for MS is complicated, as the vast majority of its symptoms are generalized and feature in tons of other conditions, some of which are serious and others benign. So, the vast majority of people who present with many symptoms found in MS won’t turn out to have MS. Time-wise, in comparison to most other MS patients I talk to, my diagnosis is considered fairly quick. MS sufferers often spend years battling for a diagnosis.

Above all, I think it was the simple knowledge that the issues I was experiencing was a medically defined condition and there would be a treatment plan that brought my relief.

However unwelcome the news, the final closure to my open-questions brought me an anchor of certainty that I could finally begin to build on.

Three years on, I'm on Ocrelizumab - an anti-CD-20 monoclonal antibody - and have experienced no disease progression since starting the DMT. Knowing the vague shape of the woods so many of us face, I'm able to accept that I haven't lost the life I used to imagine for myself before diagnosis, and so I don't need to experience it like a bereavement. That life was an expectation - a story I used to tell myself.

But, as Alan Watts once noted, life isn't really a static thing like a story. It's malleable, like a piece of music. Its rhythms ebb, flow and change. And, if we plant our feet because we're too caught up in a particular story, we're forgetting to dance along.