"I want to make memories, not appointments."

It takes an average of 12 months to be diagnosed with MND -  but for many, the wait can be much longer.

Because MND is so difficult to diagnose, people often face a long, uncertain journey for answers. And while they wait, they’re missing out on precious time with the people they love.

Research is underway that could help develop an important lab test: one that could aid faster diagnosis by neurologists. But we need your help to keep it going.

Professor Jenna Gregory’s project at the University of Aberdeen has developed a new aptamer tool that could be used to uncover very early signs of MND.

This could mean that in the future an MND diagnosis is no longer a lengthy process of elimination after symptoms have begun. And if doctors can get there sooner, people with MND could have longer to adjust to their diagnosis, make precious memories and access support.

It could also mean that people have the option to take part in clinical trials, before there’s so much damage to neurones. Most trials require people to be within two years of symptom onset. But for many, by the time they’ve been to their GP and waited for a diagnosis, it’s already too late.

Debbie's story

Debbie’s diagnosis journey started with weakness in her arms.
She was misdiagnosed several times before eventually getting an MND diagnosis.

"I joined a menopausal Facebook group, put my symptoms in a post and they said, ‘Yeah, it’s menopause’. I went to the doctor, they did blood tests and told me to take vitamins D and C because I was low.

Then when I couldn’t push myself to standing, and had vertigo and dizziness, I went back to the doctors and had an MRI. Then I stopped being able to grip the stair bannister. One day I slipped, ending up in A&E. I also had some twitching, but I still thought it was menopause.

A neurologist told me, ‘I’m sorry, but it does look like you have MS, but you can lead a normal life’.

I was shocked and confused. I searched ‘twitching from weakness’ and one of the top results was MND. I joined the MND Association’s forum and read other people’s stories. I remember going to my friends crying saying, ‘I think I’ve got MND’.

It was while waiting for results of more tests I was told I’d now be seeing an MND specialist at the MND clinic. While they said it didn’t necessarily mean I had MND, I just knew.”

“When the doctor told me, I was prepared. I knew it’s a process of elimination, with every test crossing off a different condition. You keep going until you get to MS, Parkinson’s and eventually MND.

One of the first things I did was bank my voice. The MND Association paid for it and I’m forever grateful. They also helped me with a rented stairlift that makes a massive difference to day-to-day life. I feel very lucky – not everyone is diagnosed soon enough to access support like this.

I’m also lucky I was diagnosed in time to join clinical trials. I’ve volunteered for three so far and it hasn’t always worked out, but I’m happy to try. It gives me hope. And at the end of the day, research is the only way we’ll make things better.”

You could play a part in funding research to diagnose MND faster, meaning families won’t have to wait months or even years. Because for people like Debbie, there’s no time to waste.