My own cannabis experiment

M

By Patrick Burke

I’ve had MS since 1972 and it has had a huge impact on my life. It now affects me in every which way.  The wonderful NHS prescribes drugs that will ease my symptoms, so every day I have to take a cocktail of pills. I thought the time had come to look at other solutions, so I decided to do my own cannabis experiment.

Over the last ten years the pain, twitches and restlessness in both my legs has steadily increased as well as other familiar MS problems appearing. Symptom relief drugs are now an essential part of my life but they are not always effective. Several months ago I learnt that medical cannabis helps to reduce some MS problems and does not make me feel stoned or get the munchies. Should I find out if it will help?

Cannabis plants

In June I made an appointment at a medical cannabis clinic and the doctor wanted to know if I suffered any pain and muscular problems. When I described my symptoms and added that I had multiple sclerosis there was not a problem. After a couple of weeks a bottle of cannabis liquid arrived. Everything was done privately. A 50 ml bottle of NOIDECS T10 C15 medical cannabis cost me £175 so it had better be effective.

I started taking the liquid at the start of July over a four-week period the dosage increased from 0.1 ml twice a day to 0.4 ml twice a day. I have been on this amount, 0.8 ml each day, since the end of July. The instructions are never take more than 1.4ml a day. I have never felt stoned or had the munchies and the liquid has a very distinctive taste.

Cannabis has improved my life in so many ways. To my knowledge, there is not one drug that is as effective in so many ways. I am also steadily reducing the symptom management drugs. Some things have got noticeably better and nothing has got worse

The first thing I noticed. I used to wake up most nights with a vague urge to go to the loo. Quite a performance because I catheterise  and must use a walker. I’m now sleeping through the night and I wake up feeling rested. In the evening I fall asleep much more easily.

My bowels and bladder are a constant worry and I live in fear of an accident. I do have Botox injections for a squiffy bladder but that has a life of about 6 or 7 months. I won’t go into any details except to say that life has now become a whole lot more manageable. People who experience problems with pee and poo will know exactly what I’m talking about and understand how disabling it is when events catch you out. This elephant has definitely shrunk.

My legs and feet have hurt for years and I didn’t think of it as an MS problem. Well, the constant pain has disappeared, but the problems connected with my balance and walking are still there even if walking is easier. I’m not able to walk any faster and I’m still a frequent faller. I do feel more stable and can probably walk further now that the super-hot temperatures have blown away and I am sure medical cannabis helps.

I have a prescription for 3 symptom management drugs, Clonazepam, Gabapentin and Tizanidine.  I want to eliminate clonazepam, it is addictive and I am an addict. It does not help me at the original dosage which I have already halved. I used to take 1200 mg Gabapentin each evening and that has been cut back to between 300mg and 600 mg a day. I no longer take Tizanidine. The big question, if I stop taking medical cannabis will I need to return to my original dosage of these 3 drugs?

Medical cannabis improves my quality of life. I feel happier, more alert and so much more in control over my life. I know it is not as effective for everyone, it does not help to ease my fatigue or problems with heat. Just name another drug that ticks so many boxes to help people with advanced MS. Its no cure but it really helps me. So far my cannabis experiment has been a success.

About the author:

Patrick was diagnosed with relapsing MS in 1995, but he believes symptoms started in 1972. The disease turned into secondary progressive MS in about 1999/2000. He took medical retirement in 2012 and set up the website Aid4Disabled in the same year. The website is the story of his MS since retirement. Patrick gives talks on Long Term Conditions to students of health care professions. He is a member of the BartsMS Advisory Group.

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These are the views of the author, and nobody else.

Follow Patrick on Twitter @aid4disabled

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The MS Bloggger

6 comments

  • Took THC oil which helped me a lot with spasticity/cramps. Nowadays even when i take one drop of 2.5% THC oil i get anxiety. I now take THG oil which helps with sleep and gets me some full spectrum cannabis oil. Spasticity is not such a problem thar i will pursue other options. Really expensive that medical cannabis! In Holland nothing is covered by insurance and THC oil is actually illegal. Offcourse very easy to get and really cheap considering the cost of medical cannabis. Shame they wasted so much time studying cannabis and the ECS because of ghe stigma on cannabis use. Things might be different. Good to hear you find symptom relieve!

  • Very good to know, “thanks for sharing”, and good luck from The US. Like many others (I suppose), I wonder what it might do for me.

  • Thank for this post. How great that it allowed you to reduce other medications and improve the quality of your life! I suffer with tightness and pain and tried an arsenal of management prescriptions over the years.. A lot of people don’t understand how therapeutic levels of gabapentin or others can be sedating or turn uncomfortable rigid muscles into noodles, which isn’t helpful either. My hope is that stories like yours will encourage policy makers to allow medicinal marijuana /compassionate use AND protect these patients in the workplace. Although my State of Texas has a Compassionate Use Act , used by some pwms, it does not give any protections to qualified patients from employers, which are free to screen, not hire, or fire bc of medicinal use. For this reason, I sit on sideline and listen to stories such as yours and painfully consider my options. Once again, thank you for so cogently detailing your experience.

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