That’s a frightening cocktail you describe there, Spacejacket, and one that I would be very reluctant to take, if at all possible.
I am curious about the amount and type of Magnesium you take. I take 375mgs in the morning but I wonder if that might not be enough.
You also casually mention Sativex. Do you live in Wales or did your neurologist make an Individual Funding Request (IFR) for you to be prescribed the drug? I am seeing my neurologist on Monday and plan to raise this issue as it is a drug I would like to try. Unfortunately, it appears to be seen as an expensive drug of last resort by the NHS and only prescribed once other drugs have been tried and failed. I have tried Gabapentin but stopped taking it but I have yet to try Baclofen. I suspect my neurologist will insist I try this first before Sativex, as my major issues revolve around mobility and spasticity in my legs. I have not seen him since 2014 as my 2015 appointment was cancelled without explanation. Thankfully, I am able to keep in touch with my MS nurse.
Clonazepam seems very nasty from what I have read. Do you have any experience of taking Baclofen, or anyone else reading this?
Yes - Baclofen l tried - with disasterous results - had not the strength to stand and my brain went to jelly. Thankfully, the GP realised it was the baclofen that was the cause [very low dose]. l thought l had suddenly got worse and would be permanently in a wheel-chair. Tizanidine was even worse. Neither of these drugs should be taken by anyone who drives.
No - do not live in Wales. Worcs/Warks border.
Try taking another dose of magnesium at night. As it does help so much with leg pain at night - and will help you sleep. l have to take quite a bit as l am following the Dr Coimbra Vitamin d protocol. And with the amount of vitd3 l take you need also magnesium. l also take K2 B1/B2/B12 / B7/ alpha lipoic acid/ turmeric/omega 3
It makes me shudder to think of ‘the rites of passage’ people who already are suffering have to endure, before earning a green light to be prescribed a proven medication;
“hey we have a cannabis derivative which we know works, is well tolerated and will present no added complications! But you can only start receiving it, if you first endure months of eating these other chemicals which work only sometimes and will more than likely require additional drugs to counter the side effects and complications they present.”
it makes me so angry i could retch. is this really, honestly ‘best practise’ in the provision of care?
To echo what Whammel say (cos I’ve just finished the Canbex trial), I know there are still spaces available on the Canbex trial in London. I decided worth a go, if nothing else it might be a good refresh and help me appreciate my existing meds, it didn’t cost anything, just a some time, effort and convenience but transport is provided.
I’m glad I did it as even going back to old meds is something that the consultant wanted me to adjust slightly and the physio is writing to local hospital rattling cages about things that might help my bad leg. Unlucky for me that other things have cropped up but good that they’ve been identified before I’d even noticed them.
I had seen Whammel’s post and I realise that I had been churlish by not acknowledging his suggestion. However, I live in Suffolk and the three locations on offer were too far away to contemplate.
Did you feel any benefits from the trial? When I last saw my neurologist in early October I raised the forlorn possibility of being prescribed Sativex, and it being paid by the NHS, and found that there had been a trial at James Paget in Great Yarmouth. He was going to try to get me signed up at this late stage, but I have heard nothing yet.
I am getting good results with CBD paste. No pain or discomfort in my legs and it certainly helps with any stresses. My mobility has not improved but it is certainly pain and discomfort free, which is a blessing.