Multiple Sclerosis & Me : Loss, Grief &… Renewal (?)

Last Thursday, I was officially diagnosed with Relapse-Remitting Multiple Sclerosis. There is still 1 more test, a formality at this point, but yes, I have an incurable, chronic, neurodegenerative disease.

My immune system has inadvertently attacked the insulation that allows my nerve to transmit signals. Like little rats that nibble at the electrical insulation in your house. You don’t see anything, until one day, you go and turn on the kettle. You see sparks fly, and things start to go very wrong. That’s MS to me.

Very cool.

It started on the coattails of a objectively shit year . Coming out of 2020 and into 2021, I’d developed a bit of a cold. Nothing too serious, but I had a pretty bad sore throat, an especially painful earache, and some trouble with swallowing, so much so that I’d lived on yogurt for a week (and Diet Coke. Sue me)

Thankfully, it resolved after 2 weeks, and back then I had figured I was home free.

So, on the day of Sunday, 3rd of January 2021, I innocently went out for a run.

There’s a nature reserve near my house, that provides a slice of respite from modernity for the locals. Throughout the pandemic, it had served as an oasis for me, and no doubt for the folks who live around the area.

This time though, something felt… terribly off.

I. Diagnosis

My left leg had lost all coordination, and I felt terribly weak. In medical speak, they call it “foot drop”, a general term for difficulty in lifting your forefoot off the ground. And so, every so often I was noticing that I’d inexplicably feel like I’d forgotten how to run, and my left foot would drag uselessly across the ground. It took all I had not to face-plant.

I cut my run short, and limped out of the reserve. Right next to the reserve is this huge highway. I’d crossed it hundred times before. It hadn’t been this terrifying before. It was, now.

I somehow made it. But that kick-started a 2 month long ordeal, that really, hasn’t ended yet. Over the next week, my symptoms got worse. What was just a mild foot drop, led to total loss of control over my left leg. My left arm soon followed, from the shoulder onward. I loss the ability to run, then walk, then type or feed myself properly. Over 3 weeks in January, my agency was gradually stripped from me.

I thought it was fatigue at first. I’d heard about post viral syndrome before, where people develop chronic fatigue post an infection. I went down the very, very scary rabbit hole that is CFS (or myalgic encephalitis), and read stories of folks crashing due to sensory inputs like light or the sound of people talking. An existence that is a very morbid kind of un-death.

Horrifying.

Some folks suggested functional neurological disorder, that somehow my years of chronic stress and burnout had culminated into essentially a forced shutdown of my body, that the hardware was fine, but my brain (software) had somehow gone awry.

I called up a GP, and was told that this could just be a leftover from my previous viral infection. That it would go away eventually with time. After a week of no improvement, I looked for a 2nd opinion, and got checked for stroke.

Negative.

I was referred to the Emergency department, and had some CT scans done. Nothing untoward was found. After a 2 hour wait, a pair of neurologists came down to see me. They did a standard neurological test, with those little tendon hammers to check how borked your autonomic nervous system is; and got me to touch my nose and their fingertips. Turns out my left arm was completely shit at it.

They also got me to run my left heel over my left shin. Footsie! I’d done that before, and usually under tables and not in broad daylight (gotta leave some room for Jesus) but surely…

Nope, failed miserably. Zero coordination.

I overheard words such as “ataxia” and “dysmetria” and “demyelination”. Safe to say my post consultation googling was “inspired”. A MRI was arranged, that uncovered active white spots (lesions / hyperintensities) in my brain, specifically deep in my thalamus, and a smattering of smaller ones in my cerebellum.

The neurologists at the time told me their suspicions. It was likely that I was experiencing some form of demyelination, hence the functional symptoms I was experiencing. They couldn’t say for sure, but they told me their strongest hunch at the time: Multiple Sclerosis.

What they needed to do now was more:

• blood test results (I counted 14 while I was in hospital),
• lumbar puncture results (I got 2 because the first 1 failed, due to no doubt my; and I quote, “dense musculature in the back”. A compliment I’m sure)
• and another MRI, this time of my spine.

They put me on an IV drip of corticosteroids, that left me tasting metal for 3 days. I was asked to pee in a bottle because I was a falls hazard. I refused, and pseudo-crawled my way to the bathroom when the nurses were none the wiser, because honestly, fuck that. I suffered a course of hiccups that lasted for 54 hours, during which I managed to catch a grand total of 2 hours of sleep. When I was discharged home after 2 weeks in hospital, I suffered 2 days of vertigo, and really bad motion sickness. When that resolved, the night muscle spasms came. My sleep hygiene was a shambles. Eventually, painful tonic spasms of my arms and legs surfaced every time I made any sudden movement.

Hell on earth.

When I was first discharged, I could thankfully walk after a fashion, though I would have months of physiotherapy and occupational therapy ahead of me. There would be a month wait for my next MRI appointment and test results, which for some reason, had to be sent to Copenhagen of all places.

There wasn’t much for me else to do but wait, and try my best to live normally. The wait was agony. Not having a name to pin down what was happening grated.

1 month later, post discharge I’m in the neurology outpatient clinic. My appointment was for 2:10 pm. I was seen at 3:15 pm. My neurologist conducted the standard neurological examinations again, and sat me down, asked me what I suspected was happening. She walked me through my MRI and my test results.

I fit all the criteria that would allow for diagnosis.

Multiple lesions disseminated in space. Check. Across my brain and in my spinal cord.

Lesions disseminated in time. Check. My lumbar puncture results had returned the characteristic oligo-clonal bands that 80+% of all MS patients seem to have.

I’m 25, and it seemed that this was the age range where many MS patients first get their diagnosis.

… Check.

“We don’t know what causes it. There could be a genetic component or an environmental component … It cannot be passed down to your children however.”

“Could it be epigenetic?” — I ask, hoping for direction for my inevitable 4 a.m google searches

“There very well could be — But it’s just bad luck.”

I wasn’t sure how to react. I’d been mentally preparing for the news for months, and I think my neurologist and the nurse in attendance was expecting something dramatic. Tears maybe, or anger, or denial… but all I could feel was a cloying numbness.

I sat there, in that office for a few minutes, rolling the diagnosis around in my head, like I was tasting a tasteless gumball that’s been in your mouth for too long. The kind that you have as a kid, and you know it’s too big for your jaw. Your jaw is aching, and you’re scared you might choke.

Spitting it out isn’t an option, so you roll it around, and try to chew. You feel tears welling up, but they never come.

II. Grief & Loss

Somewhere along the way, I felt that it would never end.

It’s really easy to catastrophise at times like these. I’d thought that I was mentally strong… but eventually I began to wonder *when exactly* would I be broken mentally. How serious would it need to be, before I’d truly, and utterly, give up.

Should I take out life insurance before I get officially diagnosed?

Will I ever be able have a romantic relationship ever again?

Will I ever be able to do what 25 year olds do, for fuck’s sake?

Why the FUCK am I *suddenly* getting bumble and coffee meets bagel matches now? Of all times?? As a falls risk???

The truth was that I had already felt my life unravelling weeks before my official diagnosis.

While I was waiting for my time results, I went on a date. I hadn’t fully recovered from my first flareup, and was still struggling with my coordination. Thinking back, it was a mistake, but she was cute, so, whatever. I’m 25.

It went ok, if not for the fact that my tonic spasms were excruciating. I tried to hide the spasms and they surfaced as a slight clumsiness that seemed vaguely normal to any normal person, but resisting the spasms took a lot out of me.

I laughed it off, and she thought it was funny, in an endearing way. Internally though, I was raging at myself, as my left hand contorted under the table every time I made any kind of sudden movement. I struggled to be present. I failed.

The date ended. We hugged. I promised I’d text her. I never did. My frustration with myself stopped me. I didn’t want to eventually burden her. A few days later, Melbourne was put under lockdown, and I never deigned to grab her number. For some reason, I felt relief.

It’s interesting how the small things that are no longer normal are the things that eat away at you. Like waking up, thinking that you’re in remission, and then you start typing, and you can’t, because your forearm and fingers start doing origami impressions if you exert yourself for longer than 5 minutes.

III. Renewal..?

Thankfully, all things are temporary. And my functional symptoms started to disappear after around 2 months. I was on steroids, and had started taking a lot of Vitamin D supplements. They don’t treat the underlying disease though and it’s important to keep that in mind.

Day by day, my walking improved, the tremors in my arm started to disappear, and my spasms resolved eventually.

Here’s the thing about MS. It’s a very, very personal disease. The symptoms folks get can vary hugely, due to where exactly your lesions surface in your nervous system.

Some folks never ever relapse again. Some get worse over time, transitioning from a relapse-remitting kind of MS, where the attacks come and go like the tide, to a progressive form, where you don’t get better (or go into remission), and predictably disability starts to build up over time. It’s a continuum, and thankfully I am in remission, which means I can go back to work, albeit with a cloud over my head.

For many people, the first year is the hardest. There’s a grieving process, as people grieve for the person they were before, and adjust, reassess, and eventually go again.

There’s room for optimism, and for me there isn’t a choice other than to choose optimism. MS isn’t the disease it used to be. The worst case stories we read online, come from patients diagnosed decades before where disease modifying treatments (DMDs) weren’t available. Without these DMDs, progression is inevitable.

However, decent treatments have come out over the past decade. And for people who get diagnosed now in 2021, including me, there’s a good chance I’ll live a pretty normal life. They don’t cure the disease, but only slow down the progression, buying patients time.

My neurologist tells me for the majority of her patients, living with MS amounts to a yearly MRI, and a checkup plus treatment every 6 months. Otherwise, live life and keep stress low. There will be pseudo-relapses, and there’s still a possibility that the disease will progress regardless of anything I do.

It’s the uncertainty that grates.

The things is, given how MS works, I’ve technically always had MS, it just took 20 or so years for the damage to come forward. And so, am I really different from the person I was prior to my diagnosis?

I tell myself no, but the burden of knowledge and the cloud lingering over my head remains. And it’s something I’m gonna have to get used to.

So everyday is a dice roll.

It’s always have been though, but now comes an acute awareness of how little time I have on this earth.

I might relapse again tomorrow, or I might not. The fact remains that I have been forced to live in the moment, cherish what I have, and live as much as I can, in case things start to slip again.

There will be a learning curve. There will be slips. But a choice has been made for me, so is there anything else to do but dig down and keep living? Everyone gets dealt their card in life, and I’d rather play mine then sit out.

As always, fear is the mind killer.