Why This Matters to Me

My MS Journey — 12 Years and Counting

I was diagnosed with MS 12 years ago, just before my daughter was born.

My first symptom was optic neuritis, which caused everything to appear doubled. I thought I simply needed new glasses, but during the eye test the optician immediately recognised something wasn’t right and arranged an urgent referral to the hospital that same day.

After further tests, I was sent for an MRI.

I’ll be honest — at that moment, I feared the worst. I genuinely thought I had a brain tumour and that no one wanted to tell me.

But life had a different plan.

The MRI showed demyelination of the optic nerve. This wasn’t enough for a full diagnosis, so I later had a lumbar puncture. The results showed positive CSF proteins which, combined with the MRI, finally gave me the answer:

I had Multiple Sclerosis.

My first thoughts weren’t about myself — they were about my unborn daughter. I was terrified about what this meant for her future. Thankfully, I was reassured that MS is not hereditary.

Living With MS

Over the past 12 years, MS has affected me in many ways:

Mobility difficulties, especially weakness down my left side

Recurring optic neuritis causing double vision, pain, and light sensitivity

A colostomy, due to nerve‑related bowel issues

Neuropathic pain — not normal pain, but the brain receiving distorted or incorrect signals

Neuropathic pain is one of the toughest symptoms because it isn’t caused by injury — it’s the nervous system misfiring. Treatments are limited, but over time I’ve learned how to manage it with medication and coping strategies.

MS has taken a lot from me —

but it has never taken my determination.

When I began this journey, I had no idea what to expect — and that’s exactly why awareness matters.

If sharing my story helps even one person feel understood, supported, or less alone, then it’s absolutely worth it.

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