Learning to live differently : My diagnosis at 54

Sam was diagnosed at 54 years old, and shares her experience of receiving a diagnosis of MS, which had likely been quietly present for at least 11 years.  

Looking back, my symptoms began around 12 months before diagnosis. It started with strange spasms in my right leg – just a few seconds long but enough to stop me mid-step. Then, everything went back to normal. As a regular walker, it felt odd and annoying, but not alarming. It lasted a couple of months and then it stopped. 
I sought medical advice because I also had hip pain. A physio referral and a hip X-ray showed mild degeneration, which gave me a simple explanation at the time, so I carried on. 
 

Over the summer, I began noticing that my right foot felt lazy. It slapped the ground, especially when I was tired. 
 

I had to think consciously about how to place my foot. I slowed down, stumbled, and started to fall. Five times in one week. One fall at lunchtime in town left me embarrassed as strangers helped me up. That moment made something click.

With encouragement from my husband and eldest daughter, I went back to the doctor.
 

I stumbled walking into the GP’s consulting room, which may have said more than my words could. She examined me thoroughly and listened. Because of spinal surgery when I was young, I assumed my spine had simply deteriorated over time. So when she recommended an MRI of not just my spine but also my head – and a referral to neurology – it caught me off guard. 

My next hurdle was one I hadn’t expected. I was terrified of MRIs. A previous scan years earlier had been a horrible experience. But this time, the radiology team was incredible. They recognised my anxiety immediately and supported me throughout. The scanner was open-ended, I could watch a video, and the mirrored cradle helped me focus on something other than the enclosed space. Each scan came with a countdown, which helped me to stay calm. 

Ten days later, I was asked to contact the doctor. When I called, they said I was already on the GP’s list for a call back.

She told me that there were patches of demyelination in my brain. She didn’t say it was MS then, but she expedited the neurology referral. 

Telling my husband and children was incredibly difficult – they wanted every detail. Later, I read the radiology report on the NHS app and the final line said I needed to be referred under the MS protocol. That was the moment I realised MS was a real possibility.
 

Once I started researching, things clicked. I had optic neuritis 10 years earlier but was told not to Google it because, ‘it will say you have MS.’ I also have a lifelong history of unexplained falls – so frequent that my family would say, ‘she’s down again’. Now, everything made sense. 

A week later, at my neurology appointment, the consultant carried out a detailed exam and wanted very specific timelines for symptoms. My symptom diary really helped to pinpoint this. 

He told me that I have MS and I was not shocked. Whilst I could not believe that the tiny dots on my brain scan were causing my symptoms, I finally understood what was happening to my body. I was then sent for further blood tests and he explained treatment options to me as well as referring me to the neurology nursing team. He was kind, thorough, and honest. 
 

I wanted to be informed and have an idea of what to expect. So I started to research MS. The information available can feel like a minefield, so I stuck to trusted resources such as, MS Trust. Their helpline, website and Facebook forum were all invaluable. 

I’m still in the early stages of my diagnosis journey, but I am learning to live differently. I am still me- I just need to adapt. Every day since my diagnosis I am fighting adversity. 
MS has taught me that I am resilient. It might slow me down, but it will not stop me. 
I am still here. I am still me. I am just walking a different path now. 
 

• MRI - Learn more about this scan used to diagnose MS.
• Symptom Diary - Understand how a symptom diary can help you keep track of your MS.
• Optic neuritis - Learn more about this common eye problem.
• Join our Facebook group - Become a member of our Facebook group and make friends in the MS community.