Hi. Hope you’re all ok.
I’m off to hospital this morning to meet my Specialist MS Nurse. I’m starting a month’s trial of Sativex to see if works any better than Baclofen for spasticity in my arm and foot. I’d cross my fingers but…you know (bad joke, sorry).
Good luck Jake, I hope it works for you!
Good luck Jake, really hope it works f or you. Janet x
I was on Sativex for over a year and it worked better than Baclofen/Tizanadine and painkillers for pain and spasticity. The downside was that the cost was very high
I have been on Sativex since July and it has been great for me, my spasms have gone (touch wood) I now sleep at least 8 hours a night (luxury), I was on 1200x3 of Gabapentin and 60x3 Baclofen, daily, but was not having any improvements , the down side for me is that my legs are much weaker, bladder urgency has increased slightly, but I also have to pay £425 a Month as my NHS will not fund it.
I have HSP but thought I would share my experience with the drug
good luck jake!
blimey maurice. £425 a month!! you could get the real thing much cheaper!!!
it isnt right that a harmless drug like sativex isnt funded by the nhs.
it isnt as if we all want to get high, just want to be able to have a spasm free nights sleep.
The drug only contains 20% of cannabis yet the public keep referring it as a Cannabis drug, when I have had morphine in the past nobody says anything, yet it is an opium based drug, it is never reffered to as a Heroin based drug, I think if we can lift the ‘cannabis’ label the authorities may take more notice of the drug and its benefits.
My pocket is hurting but not as bad as the spasms !
Hi Maurice. Wow that’s a huge monthly bill! But as it helps you so much, then I don’t blame you .
I see no-one asks you what HSP is,…wemust be leaving our mark, eh?
Luv Polly has
Good to hear from another HSP’er, our condition is similar in many ways to ME , I was diagnosed about 5 years ago, now am using wheelchair as legs a very poor now.
Have you tried the oxygen therapy ? I am thinking of trying it after looking at this site,
Are you aware of the HSP group ? If it is ok I will recommend this site to them.
HSP? I was just gonna ask when I read your post Boudica LOL
I’ve read that up until 1937 medicinal cannabis was used as painkiller, for spasm etc. USA first banned it. ‘CANNABIS. Hemp, or medicinal cannabis (also called marijuana) has been used for centuries. An Irish doctor, an herb specialist at a medical college in Calcutta 1830, is credited with 1training his Western colleagues in the benefits for relief of muscle spasm and pain. It was also used to treat migraines and insomnia, and as a primary pain reliever until the invention of aspirin. It became controversial in 1937 when the U.S. banned it.’
Waiting to get Sativex on NHS now it has been approved here in Wales . However that was 2 years ago and my health board only just approved a “pathway to prescribe” after lots of lobbying. They say may take another year to set up clinics etc.
l have been using Sativex for about 5yrs. l get mine prescribed by my GP - on the nhs. l could not ‘function’ on baclofen or tizanidine. They made me ‘cabbage’ like - took away my ability to stand up - and turned my brain into mush. Amitriptyline is similar and also l found l put on weight when on them.
For pain and spasms Sativex and Magnesium Malate and magnesium L-threonate - along with VitD3 /VitK2 and all the B Vits in a high dose help with fatigue - pain - depression - stress - brain power - memory. They do not work overnight - it will take a while to feel the effect. But it is lovely to take something that does not have the ghastly side-effects of most prescribed meds. l also use magnesium gel massaged into particularly painful arthritic joints and muscles. Taurine is another supplement l take - just google Taurine and MS. And l take turmeric - mix it on a spoon with Hemp Oil. Give this to dogs and horses as well.
Just realised the original post was two years ago - So did the Sativex work for JZ?
I found the Sativex useful but after 10 Months I was getting used to it so increased to 10 sprays a day , no further relief.
I have now weaned myself off the drug, have been drug free for a 6 weeks now, the money I saved I now use in weekly leg massage, then a spine massage, and use a hot tub/therapy pool 4 times a week and am finding my muscles are as soft as when on the Sativex
There was a Global Symposium back in the 1930s, set up to discuss combating the opiate trade. During the proceedings, the Egyptian delegate warned of the effects of cannabis, stating the apathy and abject laziness exhibited by its abusers. With no demand for evidence nor research, cannabis was summarily made prohibited.
That big tobacco, not to mention the paper and cotton trades didn’t wish to compete with a superior, fibrous plant originating in the middle eastern asian continent, might be speculated upon.
But yes, before this corruption of political power gained a foot hold, cannabis was one of (if not the) oldest and most widely spread plants cultivated by humankind.
Apparently Queen Victoria loved a monthly toke of a pipe (if you know what i mean…?)
Hi Maurice… Hey, I have HSP too!
We’re you ever wrongly diagnosed with MS?
I was, and a few years later, that was replaced by HSP.
Is it in your family? We don’t know of it in mine.
How are you affected?
Hi again Maurice. I didn’t realise this thread was from 2014 and had forgotten that we ‘spoke’ to each other back then!
Are you still needing a wheelchair?
Yes, all the time now, I have a progressive strain of HSP , but all is good though.
How are you now ?
I was first treated for back problems, 4 operations as I used to be a sportsman and it was all put down to that, but my walking got worse so thankfully one of the consultants directed me to a Neurologist, MS was ruled out after various scans and tests, I was tested for SPG1 and 2 which came back negative, there are now over 200 known genes though.
I then discovered that my Great Grandfather was in a wheelchair for the last few years of his life, we got his medical records and lo and behold all pointed to HSP, because of these records I am a guinea pig patient of Proff Shaw at Sheffield, my Grandfather was in the RAMC during WW1 because he walked with stiff legs and was deemed as clumsy (both were active farm workers and horse keepers).
My Father was ok as is my brother but all my symptoms started about 12 years ago, I am now 57.
Do you have any other family members with the condition ?