Finding the Positives: Sam’s MS Story

Diagnosed at 27 with a newborn baby, Sam shares how she turned a life-changing diagnosis into a reason to focus on what matters most.

‌The First Signs

I was 27 years old and seven months pregnant with our second child, when I first noticed something wasn’t right. I woke up one day and had lost feeling in my legs and feet, not a physical loss, but a sensory one. My legs still worked, but the sensation was simply gone. My midwife thought it was likely the baby pressing on a nerve and wasn’t particularly concerned, and after about a month, the feeling in my legs returned and I put it to the back of my mind.

Then, two weeks after giving birth to our son Max, the same symptoms came back – as well as a few more. My legs started to feel tingly and as if they were on fire. I soon realised they were very sensitive to hot and cold temperatures as I tried to use water to relieve the symptoms. I was also dealing with extreme fatigue, vertigo and episodes of feeling quite wobbly on my feet. Life with a two-week-old and a three year old was exhausting and chaotic at the best of times, so finding a moment to get to the doctor wasn’t my top priority, but I finally went after almost a month of these ongoing issues, and I’m so glad I did.

My doctor rang me straight after my visit and told me her and another doctor were concerned it could be a paralysis condition and to go to the emergency department. The neurologist I saw initially thought it was unlikely to be MS because my symptoms were presenting on both sides; MS more commonly presents on one side only. My Dad was diagnosed with MS in his late 20’s, so that obviously popped into my mind as a possibility – however, I knew that MS isn’t considered hereditary. I was referred for a spine MRI, and because we had private health insurance, we were able to have it done quickly.

The wait for my results was tough. I felt incredibly anxious, I waited over a week (as the scan hadn’t been marked urgent as it was meant to be), and when I got the call from my GP to come in to discuss them that morning, I knew that wasn’t a good sign. My husband previously had leukemia, so I braced for difficult news (Matt’s thankfully been in remission five years this July). I vividly remember the first words my doctor said; “Do you know what Multiple Sclerosis is?” and immediately, I said yes. The results showed lesions on my spine, “fitting with MS”. I was referred to a neurologist and for a brain scan to see if there were any lesions on my brain.

A week or so later I met my neurologist. She told me my brain scan confirmed multiple active lesions. I was diagnosed with RRMS (Relapsing Remitting Multiple Sclerosis) and I started treatment just five days later.

‌Processing the Diagnosis

When I was first told, I had a bit of a moment and a few tears, my husband arrived five minutes after I had been told (funnily enough, the exact same way it happened when he was diagnosed with AML). So the hardest part of this day was really telling Matt, my family and close friends, knowing they would be upset. But honestly, there was a sense of relief when I heard MS. I had convinced myself it was going to be something like a brain tumour and had really worked myself up waiting for bad news.

When she told me it was MS, something in me shifted into problem-solving mode: “Okay, we know what it is. What do we do now?”

Having already navigated my husband’s illness, I had come a long way in learning not to sweat the small stuff (but, it’s something I am still working on!). That experience was a real reality check, and in many ways, it helped me put this new diagnosis into perspective too. Our first born, Finn, was just shy of 9 months old when Matt was diagnosed, so juggling a baby (again) along with this wasn’t exactly unfamiliar territory. Honestly, these boys have saved us in these moments, we are so lucky.

This made me think about what’s truly important, the kind of people I want around me – knowing we would need a lot of support and consistency around us, and how I wanted to spend my time going forward. It made me focus on the positives and try to make the most of each day, taking them one at a time.

I also can’t help but feel grateful for how far MS treatment has come. My Dad was diagnosed with Progressive Multiple Sclerosis at a time when there wasn’t a whole lot on offer. 25 or so years ago, he was told you had to have two MS “attacks” within a year before doctors would even take another look. Dad’s now in a wheelchair & is legally blind from an eye condition. But this doesn’t stop him. Although some days aren’t easy, he still manages to show up as a pretty awesome Grandad, enjoys swimming and playing wheelchair basketball. I admire him so much & am thankful for the determination he has taught me, and that MS doesn’t have to rule your life, most importantly, your mind.

The progress in treatment over the past few decades is extraordinary, and I feel incredibly lucky to be diagnosed now with these treatment opportunities.

‌Treatment and Navigating the Journey

I started on natalizumab infusions just five days after my official diagnosis from my neurologist, and they’ve been very effective. A brain scan a year later showed the lesions had reduced in size and activity, which was fantastic news. The first few infusions were nerve-wracking. I was anxious about how I’d respond to the medication and whether I’d have a reaction. Those first six months were a real challenge, especially with a breast-feeding dependent baby. I’d say it took about six months to truly accept the diagnosis and find my new normal.

At the start of my treatment, there was some extra testing done to check safety around my medication. I tested positive for the JC virus, which meant after two years on natalizumab the risk profile changes and I need to switch medication. I’m now about to start ocrelizumab, so I’m embarking on a new stage in my treatment journey. There’s been a bit of anxiety around a potential new lesion that was found on a lower back scan a few weeks ago. My neurologist isn’t sure if it’s new or not as that part of my back unfortunately wasn’t initially scanned, but I feel I know my body well enough to sense that I’m doing okay.

I do notice my symptoms more in the lead-up to each infusion. Hormones also play a significant role; I experience more of a flare-up around my period each month, which can be quite rough, particularly when it coincides with being due for an infusion. I wanted to mention this for any other young women who might be going through similar things, you’re not imagining it. It does settle down – I do feel that my MS is quite reactive to hormonal changes.

‌The Support That Makes It All Possible

I feel so lucky to have an incredible support network around me. My husband, my immediate family – parents and grandparents, and closest friends have all been amazing. My Mum has Fridays off and we joke that they’re now ‘Sam days’. She looks after Finny and Max while I’m at my infusions. When I’m really struggling, it’s hard to keep up with them. So I would ask Matt or Mum to come home early from work, or ask my grandparents to help. Not everyone has that level of support, and I don’t take it for granted for a second. My family is absolutely incredible.

Our two little boys are honestly one of my greatest sources of positivity. On the tough days, when I catch myself going down the ‘why did this happen to me’ path, or worrying about the ‘what ifs’, there’s simply no time to spiral – Mum life doesn’t stop! That’s a blessing in disguise. I also love having something to look forward to. I’m always planning something; kids’ birthday parties, get-togethers with friends – having things to look forward to really helps me mentally.

I also run a small business called Finn and Lou, making baby mobiles, Christmas trees, lots of different felt pieces. Keeping busy doing something creative is really good for me. On the harder days when my legs aren’t playing the game or I’m exhausted and starting to feel anxious, I talk to my husband and we find something funny to watch on TV, or a series I really have to concentrate on. It’s amazing how much that helps to reset my frame of mind. Being in other people’s company is really good for my mindset, being alone is when my mind is more likely to wander.

I’ve also found a lot of purpose in giving back where I can. Last year, with the help of my family, friends, and an incredibly generous woman named Debbie, we organised a sunflower fundraiser for MS New Zealand. Debbie kindly donated her entire field of sunflowers in North Canterbury, and together we picked around 500 stems, then bunched and wrapped every single one by hand. We sold them throughout our community and ended up raising $1,200.

Standing in that field, surrounded by people who wanted to support not just me, but others living with MS, was really special. It turned something that can feel quite isolating into something positive, connected, and full of joy. It reminded me just how powerful community can be, and how something as simple as a sunflower can bring people together for a really meaningful cause.

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Looking ahead at my goals and aspirations for the future

I guess my one goal is to live a long, happy life, with minimal symptoms. To continue being a fun and active Mum for our kids without MS getting in the way. We travelled a lot before Finn and Max came along and would love to take them on some exciting adventures overseas! I have really high hopes for those of us living with MS.