My own cannabis experiment
Medical Cannabis contains THC & CBD
I’ve had MS since 1972 and it has had a huge impact on 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. Time to look at other solutions. I decided to do my own cannabis experiment.
Why?
Over the last ten years the pain, twitches and restlessness in both my legs has steadily increased. Symptom relief drugs are now an essential part of my life but they are not always effective. Apparently 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?
Time to go for it
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 problem. After a couple of weeks a bottle of cannabis liquid arrived. A 50 ml bottle of NOIDECS T10:C15 costs me £175 so it had better be effective. Everything was done privately.
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 for two or three weeks. Instructions are never take more than 1.4ml a day.
Cannabis experiment
Cannabis has improved my life in so may ways. To my knowledge there is no one drug that is as effective in so many ways. I am also steadily reducing the symptom management drugs.
Sleeping better
I used to wake up most nights to go to the loo. Quite a performance because I catheterise and must use a walker. I’m now sleeping through the night and my sleep quality has improved. I wake up feeling rested and in the evening I fall sleep much more easily.
My bowels and bladder
Both are a constant worry and I live in fear an accident. 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.
Pain and stiffness
My legs and feet have hurt for years and 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 in trumps. Walking might not be so painful but I’m still a frequent faller
Symptom management drugs
I take 3 prescription 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 current dosage. Can I cut back on the other two? In six weeks I have halved my intake. If I stop taking cannabis will I need these 3 drugs?
There is no argument
Medical cannabis improves my quality of life. I feel happier, more alert and with a better control of my life. I know it is not as effective for everyone and it does not help to ease my fatigue. 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 is a success
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I’m a lucky guy Fampridine works for me
I am Patrick and I have advanced multiple sclerosis
August 2022
Hi Patrick,
I have some questions regarding medical cannabis:
How did you go about getting a private prescription?
What was the process?
Are you still taking it?
Best wishes
Bob
PS Finally ‘thank you’ for introducing me to the Travelscoot all those years ago. I think just before you started aid4disabled.com. I’ve upgraded each time a new model came out. Currently I have the Travelscoot Escape. Fitted with the seat shock absorber. Improves comfort on cobbles no end.
Hello Bob,
I’m still taking medical cannabis, at the moment I use Lyphe https://www.lyphe.com. They are OK, I have heard good reports about a company called Sapphire. Google medical cannabis. I only take it in the evening, it does make me feel a bit light headed, a sensation I do not enjoy during the day.
Pleased that the TravelScoot is giving you lots of pleasure. It gives me independence, freedom and I love the opportunity to just get up and go
Hi Patrick and everyone else, I have been prescribed Sativex (cannabis in a spray) by my consultant, no cost to me, been taking it for about 12 months and it has made nightimes so much better, little or no spasms and much deeper sleep. My prescription for Sativex is supplied the pharmaci at my local Hospital, and they deliver it for me. I understand that some NHS authorities have taken the decision not to supply Sativex but it must be worth a try?
Hello John,
The original prescription must come from a consultant and quite a few NHS trusts will not allow Sativex to be prescibed. That is certainly the case with my concultant and the Royal London hospital. I have to get mine privately
Sativex is certainly wonderful stuff. Sleep, bowels, bladder and mental well being have all improved significantly since starting medical cannabis and there is no payback. I just take about 0.6 ml when I go to bed. If I take it during the day I feel a bit light headed, not a sensation Ienjoy these days
Hello Patrick
We have corresponded by email many times, and we also met years ago in London when you were speaking to a group. In fact, I think you advised me when I was considering getting a TravelScoot.
Anyhow, I noted in this blog your problems with bladder and bowel. I have “solved” the bladder problem by self-catheterising twice or sometime three times a day. But I also use the Conveen device during the day and also during the night-time and I’d be happy to say more about my experiences with this.
Bowel problems are more of a worry. I have been working with a group in Cambridge on devices that may help, and know of other places that are finally addressing this problem. Again, I would be happy to share my experiences. Finally, I am trying to start a bowel support group for patients at my local GP and have met with support.
Good luck with your move.
Hello Chris,
I have self catheterised for several years and now receive botox injections into my bladder so it is always relaxed and never has a spasm. Bladder incontinence is a serious problem for people with MS and medical solutions exacerbate bowel problems, all drugs arct like liquid cement
I also suffer bowel incontinence and constipation issues. I have moved from Laxido to super strong Senna and other laxatives Basically cannabis makes the MS Elephant in the room much smaller and so my life is easier to deal with. It improves my quality of life in so many other ways as well. no pain and I sleep through the night way.
I would like to talk to you about your work with a bowel support group. I might be helping with a study for the MS Society into srlf management of bowel issues. No one really wants to talk about poo and piss problems that includes many consultants and patients as well.
Been thinking of trying this for years now. Although I don’t have ms my stiffness, bladder and pain symptoms are similar to yours.
Such a shame our government is so blinkered when it comes to the medical use of cannabis. It is very expensive and cheaper to get the illegal sortbut I dont want to be stoned. I may very well give medical cannabis a try to see now and will let you know if it helps. Thanks for the info.
Hello Miles,
I’m sure Weed works out cheaper but it is less predictable. If you do decide to try the prescription route then a 50 ml bottle of medical cannabis costs £150. Contact The Medical cannabis Clinic and ask about project 21, that’s what I’m doing.
How do you find a medical cannabis clinic? Do you have a link or phone number?
Hello Ian,
Someone on Twitter mentioned it. Just google ‘The Medical Cannabis clinics’ and all the details will pop up. I’m sure there are plenty others