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Spoke to MS nurse - Sativex

I had my telephone appointment with my MS yesterday we had a long chat. I told her i am just about done cant do this anymore. the orthotics signed me off as a hopeless case with just WE CAN KEEP YOU COMFORTABLE, i have tried most of the meds i am sensitive to them, i think it runs in my family.

she did mention Sativex which i know is really hard to get so she will request the neuro contact me to talk about treatment options.

I am not sure i want to take this stuff as i read a lot of negative stuff and i know when i saw nuero a few years back he said he hadnt heard anything positive about it.

anyone take this successfully i have PPMS. My spasticity and spasms at night are getting worse and worse. i wake up everynight in pain and find it hard to get back to sleep.

or is there something else you take. I have tried, amytript, lyrica, duloxtine, and a few others but they make me feel like a space zombie.

CC.

sorry to hear that you are have such a crappy time CC. As usual I have no useful knowledge or experience to share. Sending you virtual medication and a bit of good luck.
All the best
Mick

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I find magnesium helps ease problems with spasm & cramp and is a beneficial mineral, so no harm in trying.

Incidentally, I was on the original Sativex trial nearly twenty years ago and apart from a few too many sprays making me a little giddy, toleration was ok. Unfortunately, it didn’t make any difference, but symptoms were much milder back then.
Not particularly useful, but mentioned it because I am PPMS too.

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it all helps thank you. my magnesium is fine its all been checked. but i did wonder it myself but doctor said my minerals in blood were very good.

the neuro and orthotics told me my toe is due to nerve damage in spine or something and nothing more they can do. so its a case of live with it. thankfully i had a better night. I hope your ok though PPMS is so not understood i dont think by the medics. xxx stay safe.xx

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Hello CC

It’s unusual for you to be expressing your misery about your symptoms. I think you must be really suffering. I am sorry. MS is an absolute *¥€=;#!!

I only tried Sativex a couple of times some years ago. It tastes horrible and I didn’t feel it helped at all. I also tried some actual cannabis to see if that helped (a friend who smokes the stuff gave me some!). It didn’t, help that is. I believe that some people respond to CBD/THC (the active ingredients in Sativex and cannabis) and others don’t. I never have.

My rehab neurologist (lovely favourite doctor) did offer me a prescription for Sativex a while back but I refused on the grounds that I didn’t think it would work.

It does work for some people though, so if you’re given a prescription, it won’t hurt to give it a go. The drug leaves your system pretty easily and safely, so it won’t give you any bad side effects. It will just work or it won’t.

You’ve said you didn’t get on with any of the drugs you’ve tried for spasms an spasticity, but the ones you’ve listed are for neuropathic pain not spasticity. What about Baclofen, or Cloneazepam, even Diazepam? Personally, I couldn’t bear life without Baclofen. I take the maximum amount orally you’re supposed to take and sometimes have an extra one or two. I started taking Clonazepam when I noticed a sort of tremor, it felt like palpitations, but wasn’t. The Clonazepam helps immensely.

I think it takes a lot of trial and error to sort out drug treatments. I agree with you about being a zombie. Certainly Amitriptyline too late in the evening has a ‘hangover’ type feeling the next morning. For years I avoided taking it for that reason. But my rehab doctor (again) told me to take it by 7pm. That did the trick, I got used to it and now take it by 8.30 with no problems.

I hope you get something that just helps with the pain a bit and maybe gives you a good nights sleep.

Sue

Hi I taking Sativex since March 2019 and honestly wouldn’t be without it. My spastisity was at the point where I was at the end of the line with it and he had mentioned it before 2 me so I asked him to let me trial it. There is a titration period whereby you build up the sprays over a week or 2, and it is definitely mind over matter when taking it. My mindset is and was this is for spastisity and that’s exactly what it does it keeps my spastisity at bay, I don’t get “high” or anything from it and you only take the amount of sprays you feel you need on any day I take about 3 a day now and always during the day. It is expensive but check if it’s available on the NHS. Only my husband and parents know I take it because I feel if anyone else knew they’d have an opinion I don’t need to know or hear about. Hope this helps you and best of luck with whatever you decide to do. I also take tizanadine 2mg if you wanted to think about that.

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