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Diagnosed with Multiple Sclerosis (MS) at 34: my story

Woman lying on her side in bed smiling at a baby
Photo by Kevin Liang, Unsplash

You’ve heard it a hundred times, that no two people with Multiple Sclerosis (MS) will ever have the same journey. This is my story.

7 and a half years ago, I was 8 weeks pregnant with my second child. Life was amazing. I had a beautiful 7-month-old son, a gorgeous husband, and a carefree life growing a family.

Then one morning, my world changed for good.

I felt the tip of my tongue start to tingle, which very quickly became a numbness up one side of my face. Passing it off as a pregnancy symptom, I carried on with ‘mum life’ for a week until my husband convinced me to go to our local hospital ER.

They immediately thought I’d had a stroke and wanted to investigate further. A stroke! I knew deep down that, of course, nothing was wrong with me. How could it be? I was a healthy young mum in the prime of my life. But I decided to humour them and go along with their ‘investigations’ until they could reassure me that I was being over-dramatic and the numbness was just (another!) pregnancy symptom.

After that, everything happened very quickly. I underwent a neurological exam, followed by an MRI of my brain and spinal cord. Then, as if in slow motion, I heard the words:

I’m very sorry to tell you, you have an aggressive form of MS.

My brain was covered in active lesions.

How could this be? Not me, surely; they’ve made a mistake! My chest tightened and I couldn’t breathe, which morphed into a full-blown panic attack.

I saw 8 more neurologists after that, hoping that each one would tell me it was all a misunderstanding. But after each new meeting, my hope dwindled. One even told me to abort my baby so I could start treatment as soon as possible.

MS has no cure. It can be treated, and slowed down, but never stopped.

The long road ahead begins

My beautiful daughter was born in March 2014 and I started treatment 2 weeks later. 3 weeks into taking that drug, I lost complete sensation to my left side. I had failed my first drug modifying therapy. So I was put onto a different drug, promising results as long as I didn’t catch a specific virus that would attack my brain and kill me!

I had no choice. With my MS being as aggressive as it was, I started on monthly infusions of the new treatment drug. The plan was to be on it for 2 years and then reassess.

I spiralled into a depression. A huge black cloud hung constantly over the wonderful life I had planned for myself. I’d always wanted to be the ‘perfect mum’ and the ‘perfect wife’, yet all I could see in my future was sickness, adult nappies, wheelchairs, and nursing homes.

Then one day…

Something popped up on my Facebook feed; a flyer for a challah bake to raise money for a woman in Taree (on the NSW Mid North Coast) who was going to Russia for a life-saving treatment for MS!!

Life-saving treatment?! I immediately decided I had to get all the information I could about this apparently miraculous treatment.

HSCT, a glimmer of hope in the dark

This treatment is called hematopoietic stem cell transplant (HSCT). It basically resets the immune system so afterwards, your body has no memory of ever having MS, which sounds miraculous, right? I certainly thought so!

It comes with many serious risks, including a high mortality rate. But discovering a tiny glimmer of hope as I looked at my young, perfect family, was all I needed. I made a promise to myself that I would do everything in my power to fight this monster.

And so the research began.

I knew if I was going to do this, I would do it with my eyes wide open, gathering all the information, statistics, and knowledge I could. I spent 3 solid years researching. It took over my life. I lived and breathed HSCT. I joined HSCT Facebook groups, called people from all over the world asking questions, gathering information, spoke to doctors at the top of their professions in Israel and Russia, and was repeatedely turned down for the trials here in Australia. I was on waiting lists in Russia and Mexico and was 100% prepared to go overseas if I had to, but obviously dreamed of being able to undergo the treatment close to home, with my family close by.

My neurologist here in Sydney, who I saw every month, kept on reminding me there was a serious risk of dying if I did undergo the HSCT treatment, so I was in a constant state of limbo. I couldn’t stay on the drug that I was on indefinitely, but I couldn’t come off of it either.

It was clear to me – if I died trying to find a better life, at least I’d have died fighting, and my children could be proud of a mum who never gave up.

Pester power!

Every month I would present my neurologist more research to prove how much I deserved to be on the local trials and to prove that, caught early enough, I would not only survive, but that the treatment would work.

Road block after road block, I carried on pushing and researching and pressuring until finally, the criteria of the trials were adjusted to enable me to participate! I cried happy tears, not understanding then the (very long) road ahead.

First was a grueling week of chemo. I was pumped with anti-nausea drugs but still couldn’t fight off the sickness. I ended up with hemorrhagic cystitis, which I was told would need surgery for at a later date.

Then followed a week of injections to get my stem cells up, which gave me such bad bone pain that my husband had to carry me up and down the stairs. Next I had my stem cells taken out. I wasn’t allowed to move a millimeter for 8 hours straight as 6,013,000 stem cells were harvested.

A few weeks later, my hair started to fall out which, as a woman, is extremely confronting. But I wore my shiny bald head with pride as I refused to let MS sink me!

So there I was, no hair, my stem cells frozen in time, when I got the devastating news that the trials were off. I wailed. I had already started the process! Surely they couldn’t leave me hanging like this? How could this be allowed happen? Tragically, two people had consecutively died on the trial.

My hair eventually started to grow back and with it doubts about whether I was doing the right thing. But by this time, I was truly a ;woman on a mission’, harrassing my hematologists until they gave the go-ahead for me to continue.

A new dawn, a new day

I remember the morning like it was yesterday. I had to be at the hospital at the crack of dawn. Everyone was still sleeping. I crept into my kids’ rooms and, with tears falling from my eyes, kissed their foreheads not knowing if I was ever going to see them again.

St Vincent’s Hospital (in Sydney) became my home for the next 6 weeks. I plastered my room with photos of my husband and children to remind me who I was doing this for, and the long week of chemo started, again.

During that time, I caught 3 infections which nearly killed me, along with developing terrible mucositis, ulcers in my mouth, esophagus, and stomach, serum sickness, an allergic reaction that came with rash and fever. I had spinal taps and daily hallucinations. It was horrific.

I was so overwhelmed by everything that was going on during this time, that there was no space for positivity. It was a matter of survival, one hour at a time. I was grateful that two of my closest friends, Annie and Naomi, were able to be there for me throughout all of this. Naomi showered me as I was too weak to stand. I don’t remember this but she says I called her in the middle of the night one night, saying I was too scared to sleep as I was so afraid I woud die, so she raced to the hospital to be by my side.

The road home

Incredibly, after 2 and a half weeks of that living hell, my levels started to rise sufficiently that a week later, I was actually deemed safe to go home.

Today I am 2 and a half years post-HSCT. My body and brain, although scarred, are no longer sick. My immune system is no longer attacking my body. 7 and a half years ago I was diagnosed with aggressive, relapsing-remitting MS, which I was told would destroy me, yet I now no longer clinically present with having a diagnosis of MS.

My hair has grown back and I live a completely normal life without that awful black cloud hanging over me. I endured this all for my family, for myself, and I know they are proud of me for never giving up and fighting for a better future for us.

I fought for this. This life. My life.

It was in my hands. My battle, this journey, could have broken me, but it didn’t.

I refused to give up. And for that, I am here today. A modern-day miracle!

Click here to donate much needed funds for MS research in Australia.

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