Real patient voices: Multiple sclerosis, medical cannabis, and me

Multiple sclerosis affects an estimated 1 in every 400 people, and at Releaf it's consistently among the top 20 conditions we treat with medical cannabis.

Despite recognition as a suitable treatment option for MS symptom management from the National Institute of Care Excellence (NICE) and the Medicines and Healthcare products Regulatory Agency (MHRA), NHS prescriptions are rarely issued, and this has left thousands turning to private healthcare clinics like Releaf for support. 

Following on from World MS Day, today we share the stories of Debs, Matt, and Jean who have made this transition and received Releaf prescriptions for medical cannabis, or prescribed cannabis oil, to manage their symptoms, and regain a sense of control. 

Debs: Discovering medical cannabis for MS after decades of caring for others  

Recently, we had the pleasure of speaking with Debs, who spent over 20 years working as an army-nurse, followed by 10 years working in child protection and domestic violence cases until she retrained in her early fifties to find her calling as a psychotherapist.

With her background in healthcare and in-depth medical knowledge, Debs had long suspected she had MS before she was officially diagnosed, but she’d also been diagnosed with trigeminal neuralgia and decided to be upfront, and ask her neurologist about it. 

After an MRI scan confirmed the lesions on her brain had almost doubled (from six to eleven), Debs received her official multiple sclerosis diagnosis three years ago. 

When we spoke to Debs, she told us: 

“When I was first diagnosed with MS, I was absolutely reeling, because I'd seen terrible cases during my nursing days in the army. Eventually, I gave myself a kick up the backside and thought, “Right, Debs, come on. You've got to deal with this!”

My pain was extreme. I had severe electric shocks going through my arms, legs, hands and fingers, double vision, and numbness in my feet, so I was falling over a lot - walking a bit like a drunken duck. I was literally careening into people. 

The frustrating thing was that I did everything possible to keep as healthy as I could: CrossFit, yoga, going out for walks and a low-carb, low-sugar, low inflammation lifestyle diet plan, but I still wasn’t making any progress… I was also prescribed many medications, and I’ve tried most of the anti-epileptic drugs, like carbamazepine and gabapentin. The side effects were pretty harsh - dizziness and a fuzzy head….

Last October, I completely came off gabapentin and all the anti-epileptic pain medications. I followed my neurologist's instructions, but it was still really tough. It's like going cold turkey - horrible symptoms - just awful. Luckily, by then I’d already been introduced to Releaf, which made things much easier. 

My dosing routine was designed in consultation with different doctors at Releaf. I've had follow-up consultations virtually every month, and received a lot of advice from the doctors, but the final decisions about the treatment plan were up to me. 

I started with medical cannabis oil, only a tiny bit, twice a day, and even a small dose made a big difference in my pain symptoms after only a few days. I take my cannabis oil in the morning at about 8 a.m., and then nothing else until bedtime, and that gets me through the night. 

Falling asleep is not a problem for me because I have MS fatigue, but it helps with the pain. I’m aware that it’s more common to take medical cannabis for insomnia, but it also seems to help a lot with chronic fatigue. I used to feel as though I was wading through mud, day after day, but I very rarely experience that feeling now.”

Read Debs’ detailed account of starting her medical cannabis MS treatment journey

Matt: Making Michelin star meals with multiple sclerosis and now, medical cannabis

Ten years ago, Matt was thriving in his mentally and physically demanding role, working as a high-end, Michelin starred, fine dining chef and loving every minute of it. But then, gradually his symptoms started to creep in. 

Fatigue, muscle spasms, balance and visual issues started to affect him on a daily basis, coupled with issues sleeping, coping with stress and anxiety - things began to become impossible to ignore, and so he went to see his GP.

Matt says MS was mentioned fairly early on, and his diagnosis came a little after that. Now aged 44, Matt takes a holistic approach to managing MS, combining medical cannabis with meditation and good nutrition. 

During his interview, Matt shared with us: 

I worked incredibly long hours, and with MS it can be triggered by heat, and stress, and physical exertion. All three of those were a regular part of my daily life. The symptoms I suffer with, the fatigue, the muscle spasms, the anxiety, depression, and insomnia as well, all those things are worse at night…  [so] I started to use cannabis too just to settle down my mind, rest, and hopefully get some sleep before starting the process again the next day….

I started to communicate more with my doctors about my illicit use of cannabis - hoping that they would steer me in the legal direction, and I would get some help. But that never happened. My Neurologist’s response to me stating that cannabis does actually help, was ‘you're clutching at straws’. But I knew it helped, and I knew my NHS doctors weren’t going to. 

I found it incredibly frustrating, really not wanting to be a criminal and not wanting to go down that route, but knowing that cannabis is of benefit to people with my condition. After some research, I eventually started to come across private medical cannabis clinics…. Releaf wasn’t the first clinic I came across, there were a few I was in contact with, but Releaf seemed to be the one that offered the best service for my needs. So that’s who I went with. 

In turn, I’m no longer in those circles, and that illicit world of drugs is no longer part of my life, and I don’t want it to be. I’ve moved on from that, and now I can manage my symptoms in a more professional way….

When I was accepted with Releaf and everything was all finalised, I felt like shouting it from the rooftops and telling every single person I could possibly think of, that this is a thing you can do. 

Read Matt’s full story about managing primary progressive MS with medical cannabis

Jean: Adapting to unavoidable struggles with medical cannabis for multiple sclerosis

Jean is another resilient Releaf patient who has been living with multiple sclerosis for over thirty years. 

Now in her late seventies, Jean has spent decades refusing to let her diagnosis to define her, and has been navigating its slow progression alongside her existing commitments, such as her role as Chair of the Eco Church Committee in her village, which recently received the Gold Eco Church Award for their sustainability efforts. 

As a firm believer in the value of nature and exploring the wonders of our environment, Jean had discovered plant-based treatments were adding to her quality of life, and during an MS-UK webinar she found out cannabis-based treatments could be legally prescribed to her through Releaf. 

When we had the pleasure of speaking with Jean, she explained: 

“I’ve only had a couple of appointments with Releaf. My own doctor knows about it and said she has no problem with me using medical cannabis. The consultations I’ve had with Releaf have gone well, the doctors have been very nice. I didn’t really ask much during them because I already knew about medical cannabis, [and] I was prescribed both oil and flower.

I’ve been very grateful to Releaf because it was getting to the point where I couldn’t sleep because of a lot of pain in my legs. Now, at around half past 9 or 10 o’clock at night, I take my 0.3 milligrams of medical cannabis oil, and I sleep like a log all night until about 7 o’clock the next morning. It’s brilliant. Good sleep makes such a difference, and I didn’t realise how much I’d been missing it

I’ve even started vaping the flower. I’ve never done that sort of thing before because I don’t smoke. I’m still deciding about it -  I have only tried that a handful of times so far, but I think I will carry on with it, as it’s been very supportive.

Using medical cannabis has also helped me stay somewhat independent. Life’s been hectic lately, and there’s been talk of continuing care or going into a home, which I don’t want to do. Medical cannabis has made it possible for me to manage my health issues better and keep living in my own space, which is very important to me.”

Access Jean’s full story for more insights on her multiple sclerosis management with medical cannabis

Find out if medical cannabis could be right for you

If these stories have inspired you, and you’re keen to find out if medical cannabis could help you manage your MS symptoms, head over to our fast and free eligibility checker to get an indication of whether you meet the criteria for a medical cannabis prescription in under a minute. Nine out of ten of those who inquire receive a prescription for cannabis-based treatments.

Or if you’re living with a different chronic condition that causes pain, anxiety, inflammation, poor sleep or low mood, and you’d like to learn more about which conditions qualify for medical cannabis, head over to our blog and education section for further reading.

You can access more first-hand accounts of real life patient experiences with medical cannabis by heading over to our Patient Stories page.