Last month, it was my anniversary. It’s been 16 years since I was diagnosed with MS. It’s hardly an occasion to celebrate, but at this time of the year, I do find myself reflecting on how things have changed since then.
In 2001, Tony Blair was Prime Minister and Iain Duncan Smith was leader of the opposition. The Office was the talk of offices throughout the land, and Coldplay’s Parachutes won the BRIT for Best British Album.
Mobile phones were as portable as bricks. If you were lucky enough to have a computer, you had to unplug your landline to dial in to your AOL account. And webpages took literally minutes to load.
An MS diagnosis
Six weeks before, I had woken up on a Sunday morning with no feeling in my left side. When my GP reviewed my notes and realised I’d been reporting symptoms like this for the past five years, he referred me to a neurologist who ordered an MRI scan. Back then, there was one MRI scanner in the Midlands with an eight month waiting list.
I’d never used private health care before and haven’t since, but when my employer offered to pay for the MRI, I agreed and had the scan within a few days. Two weeks later, I was called back in to be told the results.
This appointment wasn’t what I expected. When the neurologist told me I had MS, I guess I thought he would have a plan to fix it. But that didn’t happen. He explained that we would meet annually, and that I was to contact my GP in between if my symptoms returned. But that was it.
There were no treatments for MS.
Learning about MS
I went home and consulted the font of all knowledge – the local Yellow Pages. I found a listing for the MS Society and called them. The woman I spoke to told me there was a local group meeting that afternoon and invited me to go along.
Everyone I met was very friendly but I came away in a state of shock, with a pile of publications and a membership form. I drove home wondering whether I was supposed to get a wheelchair, like the group members I had met. I was 27 years old.
Soon after my diagnosis, the first disease modifying therapies (DMTs) for MS were released. Initially, they weren’t available on the NHS, and stories circulated of desperate people re-mortgaging their homes to raise the money to pay for them.
Over the next few years, the MS Society successfully campaigned for a risk sharing scheme to convince the NHS to prescribe DMTs. And it funded the specialist nurses needed to support the people taking them.
Now that we understand the importance of early treatment, the impact of this achievement is even more significant. I eventually started taking Copaxone in 2008, by which time I was an active member of the MS Society Facebook group.
The peer support I got from this network helped me choose between the three treatment options available back then. In turn, I supported others thinking about starting a DMT, and reassured them as they administered their first, terrifying injections.
I had met a few young(ish) people via the group, but Facebook opened up a world of people like me. Some of my closest friends are people I met in our early days on social media.
Now there are lots of treatment options for relapsing MS, and more people than ever are taking one.
And recently, the MS Society announced a promising phase 3 trial that could lead to the first licensed treatment for secondary progressive MS.
I’ve learnt over the years not to get my hopes up about research breakthroughs, but it feels like we’re making real progress.
Nowadays there are many ways you can find out about MS and connect with your local MS community too. You can contact your local group for support, connect with online communities, call the Helpline, order booklets, attend events, campaign, fundraise and more.
And I’d like to think it means people diagnosed in 2017 start their MS journeys feeling informed, supported, empowered and hopeful.
Danielle was diagnosed with relapsing MS in 2001. She's a crossword ninja and apprentice yogi who is devoted to her dog Frank.