‘I hadn’t had a full night’s sleep in ten years’ - Neil's story

Wed 18 August 2021

Neil Forbes

Neil lives with secondary progressive MS. He describes the impact that Sativex has had on his life, and why he’s supporting our new campaign ‘Approved but Denied’.

I have had MS for 32 years. I went away with friends for the weekend and developed double vision, so went to see a doctor at the eye hospital. He said he thought it might be MS, but wasn’t sure. Then, when I went out ten pin bowling, I fell and afterwards couldn’t walk. I felt paralysis moving across my body.

I saw a GP and talked about the possibility of MS – as it had been mentioned when I had the problems with my sight. I was referred privately, due to work health insurance, to a neurologist who put me on steroids and sent me for an MRI scan in Manchester. I was diagnosed with relapsing initially, and then secondary progressive MS.

All my symptoms were getting worse

Before I started on Sativex all my symptoms were getting worse. I had spasms and muscle cramping every night. It was a case of when I would wake up not if. I hadn’t had a full night’s sleep in 10 years, and neither had my wife. 

It was incredibly painful with my body trying to do things it really couldn’t do as a result of the spasms. I would often cramp into a foetal position. 

I didn’t realise how tough it was until it stopped.

After starting on the Sativex I had the first good night’s sleep in 10 years.

I didn’t suffer with MS fatigue, but I hadn’t realised how much I was running on fumes due to a lack of sleep until I had some rest. I didn’t realise how tough it was until it stopped. 

I usually take four doses a day. I can tell if I only have three. But I have a spray of Sativex and it gets rid of the spasms within 10 minutes.

Read about our progress in campaigning for medical access to cannabis based trreatments

Approved but Denied

Sativex has had a marked effect on my overall wellbeing – so it seems wrong that access is dependent on what postcode you happen to live in. That’s why I’m pleased to support the Approved but Denied campaign.

Join our #ApprovedButDenied campaign