Forum

Hi guys

It’s been a while since I last made a thread, over a year in fact, time has certainly run away. I hope everyone had a good Xmas and new year :slight_smile:

I did want to ask if anyone has had any experience with cannabis based products? Until recently I’d been using cannabis oil but it’s quite expensive, and I was never really one to go for an illegal option.

Hope everyone stays safe and happy!

Hello,

Take a look at this thread in the Everyday Living section.

I use CBD paste, purchased from CBD brothers, and it helps a lot with neuropathic pain and bladder issues.

Yes, it is expensive but I have no choice. Luckily I receive a PIP which pays for it.

Have you spoken to your neurologist about Sativex?

Best wishes

Alun

Hi Alun. I’ve spoken to the Dr about it and she said it can only be prescrI’ve by an MS specialist. Since moving to Surrey in 2014 I’m still waiting to be set up with one but she assured me she was going to push for me to be set up. She got quite angry actually!

1 Like

Forgive me if I have misunderstood your message. Are you saying that you have not seen a neurologist since you moved to Surrey in 2014? When you write ‘Dr’ I am unsure if you mean your GP or a specialist.

If you have not seen a neurologist for at least three years then your GP should make an urgent referral for you. In the meantime do you have a MS nurse to whom you can speak?

As for Sativex, I am sure that you are aware that it has been approved by NICE but that the NHS will not fund it under its prescription scheme. Neurologists can plead to the NHS by making an individual referral for funds. What the criteria might be and what is the likelihood of success in Surrey, only your neurologist can determine. In England, the postcode lottery applies as always.

Although us with PPMS are perhaps not seen as often as our fellow RRMS sufferers, I seem to be on a two year cycle in Suffolk, I have good access to a MS nurse and she has been extremely helpful and supportive.

I hope that you are seen soon to discuss your options with Sativex. In the meantime, the only options are CBD, supplements and physiotherapy.

Best wishes

Alun

1 Like

Hi Alun.

It’s been a good 3 years since I’ve seen a neurologist, I’m going to make another push for a specialist next week as it is getting a bit out of hand now, I did mean GP when i said Dr too.

Thanks for the advice and info, i’ve got alot to mull over now

1 Like

Davettn,

Let’s hope you are seen soon by a neurologist so that you can be reassessed and also bring up the question of Sativex. Who knows, your NHS may consider a funding request.

If you are interested in trialling CBD paste, then I can recommend CBD brothers. I use their Blue Edition 25% CBD paste; you can buy a small amount to try. The website has had to redact all its information about usage and dosages as it is applying for a government licence to sell CBD as a medicine. Until then it can be sold as a food supplement as long as no claims are made for its properties.

I would also recommend taking a look at the Overcoming MS website. I follow the Jelinek diet which is essentially vegan supplemented occasionally with oily fish. I have been a vegetarian since 1975 therefore the transition to veganism was straightforward but I had to give up some of my principles to eat fish regularly.

If you wish to follow any developments about the possible legalisation of cannabis or the CBD licensing issue then the Volteface website is a good place to start.

Good luck and do ask if anything else springs to mind.

Alun

The CBD is legal as it’s from hemp, not cannabis but is apparently the same in terms of the CBD part of cannabis

It is very misleading if you don’t read all the details ,as it even reads as cannabis until a certain point:

Sonia x

Sonia,

Yes, the term cannabis is very emotive. The type of sativa plant grown under licence for CBD is engineered to produce less that 0.2% THC. THC is the element that is psychoactive and causes the highs. As you rightly state, CBD is legal in the UK.

The following website offers some clarity, I think.

The drug Sativex combines controlled amounts of THC and CBD. Regrettably, it is not available for us to try on NHS prescription, unless you live in Wales. Why it is considered cost effective one side of the border but not the other, I cannot fathom.

Alun

1 Like

It seems that the German government has a much more enlightened view than our own to the medicinal qualities of cannabis products. Its parliament has approved a bill put forward by the government’s health ministry to legalise the use of medicinal cannabis and make it available on prescription.

This is fantasy politics. I doubt if this will sway Mrs May and Mr Hunt in our poor beleaguered Bunker Britain.

We can but dream…

Alun

I am not sure what to say about any of this. I am lucky here in Margate I see my MS Nurse at the clinic and in the same group of room is often the MS specialist. Cannabis and savitex etc is a whole minefield.

Yes, you’re spot on. I’ve just seen so many people talking about ‘medical cannabis’ and somehow assuming that it’s ok and doesn’t you high because it’s ‘medical’.

I have tried the real deal, just to see, honest! Funny but it was my Mum who noticed how much more movement I had in my right leg - I didn’t fib either but it just goes to show!

The very reason I wanted Sativex was to keep a clear head when I was working. I’m no longer working but truthfuly would still like a clear head - MS messes enough with my cognitive function!

Sonia x

Sonia,

I haven’t tried the real deal, as you euphemistically put it, since my heady student days back in 1975. I am glad it worked for you.

Have you tried CBD paste? I use the 25% CBD proof paste from CBD Brothers; three doses per day. It has certainly helped me with neuropathic pain and mobility.

I have spoken to my neurologist about Sativex and he is looking into possible funding, but I hold out very little hope. In the meantime, I press on with the CBD paste.

Alun

1 Like

No, I haven’t. I tried the Charlotte’s Web oil when it came out but all too expensive, totally skint now I’ve retired. I only had the naughty stuff once as I packed up smoking after diagnosis and don’t want to go back to that.

Ironically, I get nabilone off-license - the Doctor who prescribes it for me says it’s cheap as chips and it works for me… sadly it’s been out of stock for months but I’m hoping the pharmacy gets it in next week. I didn’t take it every day though as truly, I think cannabis couldn’t make me quite as forgetful as the man-made version does

I truly know it works after I quit taking it after a bad fall (stepped off the top step and my leg didn’t bend, a 180 degree turn followed and I went down the whole staircase backwards), after a hissy fit two weeks later, my leg seemed to be getting worse I took one… two hours later, I realised I’d just walked up the stairs - the whole way without stopping or dragging!

I can’t do it anymore but I’m keen to get on it again as it helps tremendously. I think you can get it for MS in Scotland but needs to be off-license in England but it might be worth asking. I had to do a 9-hole peg test before starting it and after a week on it. I improved! It’s such a shame sativex has such a high price.

Sonia x

Just learnt about help with neuropathic pain is Ionic Magnesium Chloride. Found out about via Vitamin D Protocol North America - facebook group. Michael Cawley the protocol doctor in Dublin has done years of research into different types of magnesium - a must to take along with VitD. Have just ordered some from ebay uk - The Good State lonic Mag Chloride. - there was a £5 off voucher as well. Now this type of magnesium does not upset tums - and is not laxative. lts one more to add to my non-prescription drug list.

Dr Cawley is a Nutritionist - and he also has MS. Which does make a difference ,when choosing what meds to take ,doesn’t it.

Anyone got anything to add?

I met (by chance) with a lady a little younger than me today, who has rrms for thirty years now. During conversation we spoke about CBD oil, Charlotte’s Web Oil she referred to it as. Here in Ireland, she buys it from Dublin. Taken sub lingually, expensive but worth it for her she said. I know it comes up on the forum every so often. Can I ask for honest reviews from anyone who uses it please? I think my scepticism comes from my LDN trial last year. I used it for 3/4 months and found it to be of no use to me. I don’t want to buy this expensive product and feel conned.

I’m meeting my Neuro tomorrow and will (hopefully) have my latest mri results along with my blood work results, all done recently. I intend to ask her if Sativex is an option for me and if not, I shall be telling her I intend to give CBD oil a try. I would be hoping for some control of my right foot again, to be able to get rid of the freezing cold/numb feeling in it, that;s when I actually can feel it! My insomnia is also bordering on ridiculous now also. If it might help with that, that would be good too.

I’ve tried CBD Oil, LDN and Sativex (…and about 19 different medications and supplements over the years so far) and, to-date, nothing I’ve tried has had any beneficial effect on me.

Now, I’m quite sure that these things are a major help to some people, but they haven’t worked for me …so I’ll keep searching and one day I’ll hit upon something that suits me!

It just underlines the fact that we’re all different and the only way to know if something is going to work for YOU, is to try it yourself …don’t assume that just because something works for someone else, it will be as effective for you!!

Dom

Hi guys. Recently I’ve been using Lovecbd 8% and it does help a fair bit. It’s quite pricey though so it has to be used sparingly. It’ll be different for everyone and it comes in different strengths, the higher the strength the more expensive it is. Aside from USUALLY helping with my legs, it’s damn good for anxiety or for when the MS starts to get the best of me emotionally. I’d definitely suguest it

I’m sorry to hear they didn’t work on you. Sometimes everyones symptoms being different can be a pain in the arse >.<

Thanks for the input Dom. I found LDN did nothing for me, yet other people swear by it. However, today I had a routine appointment with my Neuro.

After some discussion, she has prescribed Baclofen to me, for the pain/tightness around my knees, particularly in the morning. This is a major problem for me. We all understand it isn’t going to wondrously allow me to perform the Can-Can but, monitoring the dosage and results carefully, it may offer some relief. As a muscle relaxant she said it may make me feel drowsy so to be taken at night. This possibly, might have a double benefit of helping me sleep, as my insomnia is bordering on ridiculous now. Let’s hope it does what I would like. It will be a lot cheaper than CBD.

Glad this is proving beneficial to you Dave. Whatever it takesand whatever works, eh?

That’s true, Sonia. Even though it may come from Cannabis Sativa, “CBD is from hemp” not cannabis, because it has THC levels below 0.2%: Beginner’s guide to CBD in the UK | for the Ageless

So CBD extract can be a food supplement (when the THC content of the oil is below 0.2%) or a medicine (when it is above 0.2%). That’s what the law in the UK and Europe states at the moment. Who knows what may happen next year.

Best wishes,

Kim

1 Like