Amber Perry

Let’s Kiss Goodbye to MS!

One Saturday in May 2016 I woke with a numb hand. I’d had a cold and I hadn’t been sleeping properly either, I figured it was because I co-slept with my 9 month old and didn’t think too much of it. As the day went on my arm and foot/leg began to go numb as well and in the afternoon as the numbness crept up my body I rang Healthdirect who recommended I present to Emergency. With a two year old and a 9 month old I figured the local medical Centre would be easier and the Dr there suggested a good nights sleep was needed. 

By the Monday morning I had begun to experience weakness on the left side, I couldn’t hold a cup of coffee and it felt weird when I walked and so went to a GP. She immediately rang around and found a neurologist who would see me on Tuesday but I still didn’t know anything major was happening. 

I saw the neurologist on Tuesday who booked me an MRI at 6:45am on the Wednesday morning. So my hubby, 2 year old daughter and 9 month old son, drove into the city for an MRI. I remember jokingly saying to Mark that something must be wrong because they were so much more kind on my way out than on the way in! 

By that afternoon I was having significant trouble walking and so instead of waiting until the Thursday afternoon the neurologist said to come in first thing. 8am. 

The neurologist I saw was empathetic, and kind, but also direct and left no doubt when he said the scans were consistent with Multiple Sclerosis. Through my tears, my first question was “Will I get to see my kids grow up?” my husbands was “Will our kids get this too?” 

I knew nothing about it, I knew no one who had it. I was terrified. 

We drove straight to the beach to cry. 

The neurologist booked me for IV steroids the following week and for more tests for baseline results and impressed upon me that my lesions and low burden of disease meant I was still “Amber… just with a little bit of MS.”

My disease has had some progression in the last few months and while I’m still recovering from two covid infections since December, I have had to lower my target to 50km in May 2023. Even that is going to be a huge challenge. Unfortunately that is the nature of MS - you never quite know what you’re going to get!

Since my diagnosis I have tried to be as open and honest about my journey as possible in the hope that if someone else is diagnosed, they’ll think of me and be less frightened. 

There have been so many silver linings to my disease, I have been surprised to meet new people who are fighting a similar battle. It has taught me, that nearly everyone has some kind of shit to deal with, and all we can do, as mums especially, is to support each other to make it more manageable and fun! The support I have received from friends and family over the last 7 years has been amazing. Please consider joining our team or donating to support this amazing charity - let’s find a cure to Kiss Goodbye to MS.