Julie Gould documents her journey with restless leg syndrome and medical cannabis
I was diagnosed with relapsing remitting multiple sclerosis (MS) in 1994. I was working as a corporate lawyer but had to be medically retired. There were no treatments back then and no one really had the internet or a mobile phone. The early days were very bleak.
I had highly active MS with two or three relapses every year. I always refused steroids as I was put in touch with several people who followed the Roger MacDougall diet and they told me that steroids didn't change the long-term outcome of MS, but that they could have serious long-term consequences.
In 2009 I asked my doctor to put me on Tysabri because my sister had done so brilliantly on it. It stopped all attacks instantly and I'm still on it as I'm John Cunningham virus negative (Tysabri can increase the risk of the John Cunningham virus infecting the brain).
I have had every possible MS symptom, but in particular, nerve pain has always been severe during my relapses. Trigeminal and occipital neuralgia are both excruciating. Desperate for relief, I sourced illegal cannabis and it helped enormously with nerve pain, so I’ve was always been aware of its power to help with pain.
I had been following medical cannabis news, so as soon as it was legalised in 2019, I would watch and search the internet for updates and information. I came across Project-twenty21 run by Professor David Nutt of Imperial College London and applied as soon as it started prescribing in 2020.
Restless leg syndrome
I wanted to try it for my worst MS symptom – severe, refractory restless leg syndrome (RLS). This is a serious neurological disease - people who have it have a three times higher risk of suicide. It's thought to possibly be caused by spinal lesions. Despite how debilitating it is, it's not taught at medical school or during GP training and so most GPs know nothing, or very little, about it. They prescribe dopamine agonists which work brilliantly at first but inevitably cause a severe worsening of the symptoms. It consumes your life. You cannot sit still or sleep as the torturous sensations start troubling you day and night. Mine affected my legs, arms, back and face. I seriously considered suicide to end the suffering.
Luckily, I found the organisation RLS UK and the knowledgeable members advised me how to safely withdraw from dopamine agonists with the help of opioids and cannabis.
Once off dopamine agonists, I was taking oxycontin and pregabalin but I still had severe RLS, with a score of 36 out of 40 on the International RLS scale. I was waking two or three times every night due to it.
I applied for medical cannabis to help with sleep and RLS UK. It gave me three to four hours of deep sleep after years of never getting more than one or two hours’ sleep in one go.
I then heard about buprenorphine, an opioid used for Severe RLS in the USA. I asked my RLS neurologist for it and he was not very helpful, but did say he wouldn't object if my GP agreed to prescribe and monitor.
My new GP was fantastic and agreed instantly. I did send her all the relevant research documents to support my case.
The results have been miraculous. I started buprenorphine six weeks ago and have had eight hours of sleep every night and zero RLS. I developed severe nausea for the first ten days, but then I remembered cannabis is used by chemo patients for nausea caused by their medication. The medical cannabis stopped my nausea. I waited a week, stopped the cannabis and the nausea had gone.
I now want to spread the word about low dose buprenorphine for severe RLS as there are tens of thousands of patients still suffering nightly torture. Most doctors are totally ignorant about how to treat them effectively. It's like MS treatment in the 1960s. Zero help and very little knowledge. Just look at any RLS Facebook help group.
I would recommend MS patients access medical cannabis as it can really help with pain, spasms, bladder issues and sleep. It's expensive, but hopefully that will reduce as more patients use the service.
Accessing medical cannabis
In November 2019, the National Institute for Health and Care Excellence (NICE) in the UK published guidance for cannabis-based medicinal products. The guidance states that a person with MS who experiences spasticity that is considered moderate or severe should be offered a four-week trial of Sativex, provided that existing spasticity medications available on the NHS are not effective.
There are conditions that must be met to be put forward for NHS funding. The drug company must be willing to fund initial treatment through their ‘pay for responder’ scheme and the person using the Sativex must show at least a 20 per cent improvement in their spasticity. This means that the drug company will fund the first four weeks (3 x10ml vials) of medication (if there is agreement for continued funding) for people who gain measurable benefit.
The other route to Sativex in the UK is paying for the medication through private prescription. Costs can vary per pharmacy and clinic, but it may still be possible to access the pay for responder scheme.
Click here to find out more about medicinal cannabis and download our Cannabis Choices booklet.
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