Being diagnosed with MS – part 1

It sounds bizarre, but I’ve heard tales from many that being diagnosed with MS is a relief:

‘Finally an explanation for my numb legs and lack of balance!’
‘Oh, so that’s why I can’t move my hand properly!’
‘Great, I know what’s wrong and now I can start treatment!’

I didn’t know how anyone could be okay with an MS diagnosis. But after talking with other MS sufferers, it’s understandable that being told “you have a disease but it’s treatable” is not as scary as waking up one morning and not being able to move your legs, or suddenly going blind. Although when there’s seemingly nothing wrong with you, there is obviously nothing relieving or calming about hearing the terms “multiple sclerosis” and “brain lesions” brandied around by a team of concerned neurologists.

As cruel as the hand I’ve been dealt feels, I know I’m ‘lucky’ to have been diagnosed so early after onset. To have been able to begin treatment before much damage could occur. Being diagnosed with MS is a mentally and physically draining experience, and can often take quite a long time (months and even years!). I am regularly asked by other people worried that they have MS symptoms, or on the verge of diagnosis, what the entire process and outcome is like. So for the interest of all reading, the story of my own diagnosis begins below!

~~~

I was 19 and in my second year of uni studying a triple major in marketing, journalism and German. Life was great if I do say so myself – I’d recently founded the Monash Journalism Society with friends and was planning an exchange semester to the University of Nottingham for the following year. My biggest worries were that I wouldn’t finish an essay in time, and would I be fired for cancelling Sunday’s shift at my casual retail job for being too hungover?

I had a pesky bout of conjunctivitis that I couldn’t shake (gross, I know). My GP thought it might be allergies instead and suggested I see an optometrist for treatment. So off I trotted to the optometrist, who confirmed all I needed was a short course of eye drops.
“Would you like an eye check-up whilst you’re here?” He asked.
After clarifying that Medicare would cover it (ain’t nobody got money for that), I said okay.
Several lines of tiny letters later we found that the vision in my right eye was slightly blurrier than my left eye. When I say slightly, I mean slightly. It was almost imperceptible. I could still read a newspaper using my right eye with ease.
“Mild astigmatism,” he deduced. “Glasses would correct it, if you want, but it’s not really bad enough to do anything about it.”
“Okay, cool.” I was saving money for my exchange semester. I didn’t want to waste money on glasses.
And then, on the spur of the moment, I decided to bring up the bizarre visual disturbances I’d been having. I was convinced I knew what the problem was but hadn’t planned on bringing it up for fear he might tell me something was actually seriously wrong.
“Um, so whilst I’m here,” I began, “this weird thing has been happening to my vision.”
“Go on?”
“Well every time I go running, my vision completely disappears in my right eye. It just goes really dark until I can’t see anything. But then it comes back after a few minutes. Obviously it’s a problem with my circulation,” I hypothesised. “Like I realise my blood just isn’t getting to the back of my eye, or something like that. So should I take medicine for that, or just deal with it?”
The optometrist looked slightly perplexed. “I guess it’s possible your circulation would cause that. But there’s nothing I can do to fix your circulation – I’ll take a look at the back of your eye but that’s something you should really check out with your GP.”
I nodded, whilst he pushed the ophthalmoscope up to my right eye. I sat patiently while he fiddled around with it, and then he stopped dead in his tracks. Inhaling deeply, he sat back, looking confused.
“You’re not in any pain?” He asked. “Your right eye doesn’t hurt at all?”
“Nope, not at all.”
“I know we just checked your vision, but I can’t believe you can see me at all. When you close your left eye, do the colours look different in your right eye? Does it seem like you have a black hole in the middle of your vision? Can you see what is directly in front of you? Does it feel like there is sand in your eye?”
These questions started to make me a little nervous, I confirmed that none of these were problems.
“I’m going to show you what the back of your eye looks like,” the optometrist said, taking a photo. “And then I’m going to call the ophthalmologist and get you an emergency appointment.”
This was starting to sound a bit too dramatic for my liking. “Why?”
“Well I think you have optic neuritis. But I’ve only seen it once before so I want the ophthalmologist to confirm it. Look here.” He pointed to my optic nerve in the picture, but it meant nothing to me. “Can someone take you there? They’ll put drops in to dilate your pupils – you won’t be able to see properly for a few hours afterwards so you’ll need to be driven home.”
I didn’t understand the urgency. If this was a problem, I’d probably had it for weeks, months even? “Um maybe,” I protested. “But I’ll go later this week, I’m going on a pub crawl now.” (This was my actual response).
The optometrist looked at me, bewildered, “no, you need to go now.”

The eye on the left has optic neuritis (see how there isn't a solid line around the light-coloured circle in the middle, like on the right eye?). Image source: The Lancet
The eye on the left has optic neuritis (see how there isn’t a solid defined line around the light-coloured circle in the middle, like there is on the right eye?).
Image source: The Lancet

An hour later to my greatest annoyance (clearly did not make it onto the pub crawl 😒) and building anxiety, I arrived at the ophthalmology clinic. These guys didn’t muck around. An optician rapidly ran a series of eye tests on me, before the ophthalmologist took the results and welcomed me into his office. He asked me a series of questions about my health in general, before dilating my pupils and rendering me almost blind. The ophthalmologist looked into my eyes before sitting back and nodding, “yes, it’s definitely optic neuritis.”
“Fine, but what does that mean?” I asked, not able to see anything and starting to imagine the worst. My brain was conjuring up scenarios of a degenerative optical disorder, of progressively becoming blind. “How do I fix it?”
“Unfortunately there’s nothing I can do,” the ophthalmologist replied. “I’m going to contact Monash Hospital, the neurology department will handle your case from here.”

The second my dilating eyedrops wore off, mum and I started Googling optic neuritis. I had braced myself for images of milky blind eyes and service dogs but there must have been some mistake. Every Google result said it was caused by multiple sclerosis. But I wasn’t disabled – obviously I didn’t have MS. So how could I have its most common symptom?

But when I woke up the next morning it wasn’t just the dream (nightmare) I had hoped. I was awakened by the screech of my mobile at 6am.
“Is this Morgan? This is Monash Neurology. Can you please come in immediately? Come to emergency and we’ll admit you from there. Bring an overnight bag – you might be here for a while.”

Click here to read part 2.

4 thoughts on “Being diagnosed with MS – part 1

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