Being diagnosed with MS – part 2

Settle down in a comfy chair with a cup of tea, this part of my story is a little wordier than part 1! If you haven’t already, read this post first.

~~~

It’s 8am on Wednesday morning. I’m sitting in the emergency department at Monash scared out of my wits. I scroll through my Facebook feed for the 20th time whilst I wait for a doctor to see me. The paralysing fear doesn’t let up when they finally call my name and I’m brought out of the waiting room into the treatment area. Instead my heart is beating overtime and I’m covered in a fine sheen of sweat. My panic worsens as the nurse pops an IV into my left arm. Somehow, for some reason, this is actually happening.

I’m left in a bed in emergency for most of the day while various doctors pop in and out to visit me. I have countless blood tests, eye tests, interrogations about my health and symptoms. ‘Multiple sclerosis’ is mentioned several times which I do my best to ignore. I find myself getting inadvertently frustrated at the medical team attending to me. Maybe this would be okay if there was actually something wrong with me, but my body feels completely normal. I know they’re doing what’s best for me, but I feel violated. I am constantly prodded and poked whilst doctors check my ability to feel sensation and evaluate my nerve health. Not even the soles of my feet are off-limits. And like another slap in the face, I’m admitted to stay in the “Medi Hotel”. Proof that there is nothing wrong with me. The Medi Hotel is for people who aren’t sick but require hospital services – it’s for people who don’t require acute care, like a pregnant woman who might be scheduled for a c-section, or for someone waiting to have surgery. If my doctors were prepared to put me in the Medi Hotel then I obviously didn’t need care. So why did I need to be there at all?

I’m woken the next morning (not that I’ve slept) and wheeled to radiology. That’s right, wheeled. In a wheelchair. All of a sudden, I’m not allowed to walk anymore lest my balance gives way and I fall over. I’m having brain and spinal cord MRIs, the first of many to come for the rest of my life.

Many of you will be familiar with the process, but let me try and explain it for readers that have never had one before. You’re placed on a narrow stretcher like the one in the image below, and the radiologist locks your head in with various helmets and neck braces so your head is kept perfectly still. The helmet is inches from your eyes so you can’t look around, and as if this isn’t claustrophobia-inducing enough the stretcher then motors inside the narrow tunnel of the machine. You lie inside the machine, not allowed to move whilst the scanner makes a tonne of futuristic whirring noises. For an entire hour.
(Side note: if you’re about to have your first MRI you might be a little alarmed but don’t be scared, I promise you’ll be fine. I almost enter a meditative state during my MRIs now!)

Brain MRI
Getting ready for a brain MRI. Image source: Georgia State University.

Back in my bed later that afternoon, a neurologist comes to visit me.
“I’m going to have a word with your mum, is that okay?” He asks. I nod, and mum is swept out of the room.
Through the glass wall in my room I can see the doctor sit my mum down. I’m starting to freak out again. Why does he need to talk to mum first? I’m an adult. It must be bad. I must be dying. This fear is further compounded by the words I can overhear. I can’t make out the entire conversation, but I hear enough. “Lesions on the brain.” It’s worse than I could even imagine. I have brain cancer.
I’m already crying when they reenter the room. The neurologist is carrying my scans and tries to explain the white spots all over my brain. Areas of inflammation. Scarring of brain tissue. Lesions. It’s not cancer, but it doesn’t sound much better.
“This is a typical presentation of multiple sclerosis,” he explains. “Do you know what that means?”
“Yes,” I gasp whilst hyperventilating. “When you’re disabled.”
The neurologist gives me a weak smile. “No.. No that’s not completely right. We’re not exactly sure what causes multiple sclerosis. Some unknown factor in your body has triggered your immune system to turn on itself. The nerves in your brain, optic nerve and spinal cord are coated by a fatty sheath called myelin, this myelin protects the nerve. MS means that your immune system is attacking the myelin. And when the myelin is damaged or scarred, it means that messages between nerves are disrupted. Which can lead to disability.”
“And I have it? MS?”
“Well, we’re not sure yet,” he admits. “There’s no diagnostic test for MS. The only way we can determine that it’s MS is by ruling out every other illness that would cause these symptoms as well, and then by monitoring your central nervous system. You need an increasing number of lesions to be diagnosed.”
I feel sick.

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(Not my brain). Image source: WebMD.

For the days that ensued, I was a human voodoo doll. My body was routinely drained of blood for analysis, I was pricked by sharp pins all over and once again subjected to various other tests to check that I hadn’t lost sensation anywhere. I had a spinal tap/lumbar puncture which was just as awful as it sounds. I’ll spare you the gory details but there’s nothing much fun about having your spine pierced and drained, all the while knowing that a slight movement could paralyse you forever. (If you ever find yourself in this situation, sedation is a magical thing.) I endured all of this while having a sword dangling over my head – if any of these diagnostic tests were abnormal, the doctors were going to remove a section of my skull and take a biopsy of my brain.

Luckily my bloods and the cerebral fluid from my lumbar puncture showed nothing out of the ordinary, so I began a five-day course of intravenous steroids to reduce the inflammation currently across my brain.

After a week in hospital, I was broken. I was discharged with no diagnosis or prognosis, instead I was told to go on with life and then present to the MS clinic six weeks later. But after all this, how was I supposed to walk out of hospital like nothing had happened? Like everything was fine and normal? I was absolutely distraught, I was convinced my life was over. My body felt foreign to me, it had betrayed me in the worst possible way. I was ashamed of what was happening to me and wished above all else that my brain was born in another person. And physically, I felt terrible. A course of high-strength steroids meant I was so weak I had to spend the next fortnight in bed. I was nauseous, lethargic and sensitive to light. I went from crying in my bed at hospital, to crying in my bed at home.

In the lead up to my appointment at the MS clinic, I had to have follow-up MRIs and various tests that included having electrodes glued to my head to monitor my brain activity. Walking into the MS clinic at Monash 6 weeks later, I had accepted my fate.

My neurologist looked entirely baffled. “When we sent you to get your second MRIs last week, we knew there would be more lesions on your brain. That’s what we were expecting to see. That’s the confirmation we would need to start you on treatment.”
I nodded.
“But there are no extra lesions on your brain. It’s very uncommon. That you’ve just had one isolated episode of MS.”
I didn’t understand. “But is it MS?”
“No,” the neurologist shook his head. “I believe you have ADEM – Acute Disseminated Encephalomyelitis. Essentially, it’s a one-time version of MS. It’s not recurring. It’s extremely rare.” (The incidence rate of ADEM is 8 per 1,000,000 people per year).
A million emotions flooded my body. This was not the outcome I was expecting. “So I’m fine?!”
The neurologist shrugged his shoulders. “Yes, once the current inflammation in your brain has healed, you should be. I need to tell you that there is a 50% chance that ADEM can turn into MS, there’s no way to tell which boat you’re in.”
But I’d stopped listening. I didn’t care about the future. What was important was that right now, I was fine. Everything was going to be okay.
“So take your travel plans off hold!” He indulged me. “We’ll bring you back to the clinic next year for a 12 month review. Go enjoy yourself in the meantime.”

~~~

A year later, I had just returned home from study abroad. After spending a few short months celebrating my newfound freedom (health-wise) and organising my trip, I spent 7 months being a typical, reckless exchange student in the UK. I spent more time in bars or hungover the next day than I did studying or in class. I spent each weekend partying in a new, exotic part of Europe. My brain, body and health were the furthest things from my mind.

When I returned to Melbourne, I had the MRIs my neurologist had requested without a care in the world. The morning of my follow-up appointment at the MS clinic, I could not have been more cocky. “Maybe I’ll be diagnosed with MS today,” I joked to my mum (albeit to her distress, she thought I would jinx myself). But I was confident, there was nothing wrong with me. Today my doctor would tell me that it was all a blip in my past, and that I wouldn’t need to visit the neurology department anymore.

But my heart sank when I entered his office and he greeted me with a grave expression. There was no small talk, it was straight to business. Hastily pulling up my scans, he showed me the new little white spots that had appeared all over my brain. “I’m afraid this means you have multiple sclerosis.”

And that was it. I didn’t know how to respond, I couldn’t talk. I started sobbing whilst both my neurologist and the MS nurse tried to console me. “It’s not what you think,” the doctor offered. “What most people know of MS, they’ve gleaned from the MS Readathon, or other charity initiatives. These show the worst case scenarios of MS, we’ll work together to make sure your life is as normal as possible.”

But I didn’t hear any of this, I was too distraught. The neurologist started talking about treatment options, but I was too far gone to consider them (I’ll discuss my experiences with treatment in another post).

Being diagnosed with MS was a lengthy and traumatic procedure. Unfortunately that’s the nature of the beast. It’s awful to live with a disease that has to worsen in order to be diagnosed (in order to begin treatment in order to get better!), but there is no other method.

If you are currently going through the diagnostic process or are recently diagnosed, I promise it gets easier. More important than my own anecdote, the US MS Society has some really great information on what you can expect during diagnosis (and is a little more impartial than my review!).

If you’ve managed to get to the end of this post without closing the window, congratulations! Being concise is not my strong point 😉
I’d love to hear from you. Do you have MS? What was your diagnosis like? How can the diagnostic process be improved?

Looking forward to an important discussion,

Morgan x

11 thoughts on “Being diagnosed with MS – part 2

  1. I just had to say that reading your post was like reading something I could have written. I had the same sort of experience almost 5 years ago. A weeks if tests in hospital and then told it was probably viral. Then earlier this year’s I was told after a relapse that it was MS. And I have to say I reacted pretty much the same way as you. I started blogging from my more recent experience of being diagnosed. My follow up mri is tomorrow. Hope everything works out for you.

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    1. Hi mummy2boys, I’ve heard from a few people now that have had experiences like ours – it seems like it’s only too common! It’s so frustrating that these things can go undiagnosed for so long, 5 years is a long time! Did you feel okay in the 5 years that lead to your diagnosis? Hope your MRIs today go okay xxxx

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  2. Your experience was amazing! I’m sure it made you a much stronger woman. There were many years between my mom’s foot drop and ultimate diagnosis. I remember occasions when I was a teenager (she would have been in her early 40s then) that her leg would ‘go out’ as she put it. She wasn’t diagnosed until she was 55.

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    1. Thanks for your lovely comment! That’s incredible that it took your mum so long to be diagnosed, hope she is going okay xx

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  3. My journey to my MS diagnosis took a longer route than yours. In many ways I’d have been more fortunate to be diagnosed before I was 25, after years of dyspraxia, followed by a total ‘physical breakdown’ when I had my first son. From 25 onwards, I had many ‘stress-like’ illness episodes, often leaving me unable to care for my children. (Their father was useless and I’m very happily married second time around). I had a neck problem…cue, collar and traction – still done then (as I’m now 61, Morgan).
    Eventually, in my late 30s, I returned to teaching. That’s when all the little illnesses, physical accidents and a problem nobody wants to admit, continued. The worst was the unseen one; trapped in a classroom, far too far from a staff loo, I suffered and once dismissed the class while still seated. No child needs to see Miss with a wet skirt.
    Then I hurt myself badly and it was decided I was a safety hazard. Not staying on your feet is quite dangerous. I retired at 41 when I was diagnosed with ‘possible MS’. The possibility rather than official DX stayed with me for the next few years while the treatment for incontinence increased.
    I moved town with hubby no2 9 years ago. My new urologist has taken the awfulness of life with a catheter away from me with a permanent solution – an urostomy. The brilliant new neurologist dug into my various hospital notes and discovered a definite diagnosis had been witheld because, quite unlike you, my MRI scams do not show lesions. An EEG showed my brain cells are dying early (short term memory problems) and the visual evoked potential shows a latency that means I don’t ‘see’ with my brain until fractionally after the image is seen by my eyes. So that’s why I was falling around so much.
    Sadly, I missed out on the disease modifying drugs you’ve been given. What was relapse-remitting is now progressive. Life is not easy but I’m still me – a much-loved daughter, sister and Mum, not too mention an adored wife. Hubby no2 entered my life 11 years ago with his eyes wide open to MS. He battles tirelessly to ease my daily life and is currently arranging a home move for us, to a flat in a building where 24/7 care will be available.
    I’m very much alive but I pace my life to suit my needs. I love reading and writing, yarncraft and papercrafting. Life is good.

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    1. Apologies for the late response Shirley, I never saw your post! I hope you are doing well, it sounds like you have adapted well and are leading a full life in spite of MS!

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  4. Hello Morgan, reading your post it was like a “back in the days” for me… I have experienced optic neuritis one year ago and I can perfectly understand how you felt…the fear of Ms after searching the symptom on Internet, all the exams (Rm, visual evoked potential test, and lumbar exam:it was terrible, I stayed 10 days in bed…and it was positive, so Ms was confirmed…); I felt lost because I associated Ms with not being able to walk sooner or later. I have cried so much during those days!!! But neurologist assured me it will not be my case.
    The hospital where I live was really great, I started immediately with steroids and I could see well quickly again. My diagnose came already after one month…while many people with this symptom, which can be confused with something else, took years to have a right diagnose, with a relapse risk!
    Strange was, I hade more than 40 lesions…2 big and active.
    I am having Tecfidera cure and first MR showed a reductions of the lesions.
    I admit our country( Italy) is getting more and more aware of this disease and giving much attention and funds to research and new therapies.
    Sorry to read that you have not been lucky with the other therapies, and wish Zynbryta will be the best for you! Stay strong 🙂
    Greetings from Italy! X

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    1. Hi Magei, thanks for getting in touch! That is amazing to hear you were diagnosed so quickly and I’m glad Tecfidera is working for you! Thanks for your well wishes, hope you are doing well 🙂

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