Last reply 1 week ago
ms hug

I sent a message a few weeks ago about being just diagnosed with ms . since then I have the dmt pills sorted out although they have not been sent yet . my current problem is I am having spasms in the muscle around my midriff . I am getting cramps and then when it releases it is very sore inside .this has been happening for over a week and seems to be worse when laying down . the ms nurse upped the dose of pregabolin and prescribed baclofen ( I already take amitriptyline ) but after a week nothing seems to be happening . I have been told about a mouth spray called sativex and told since it is expensive there is no chance on the nhs .has anybody tried this ? does it work ? did you get it on the nhs ?
I don’t want to try and get it if it does not work
can anybody advise please

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stumbler
1 week ago

@billwood , a week isn’t really long enough for these painkillers to work, so keep persevering.

Prescriptions for Sativex are as rare as rocking horse poo, unless you live in Wales! Here’s some details about Sativex:-

https://www.mstrust.org.uk/a-z/sativex-nabiximols

The “MS Hug” is an unpleasant symptom. There’s a description and some ideas here :-

https://www.mstrust.org.uk/a-z/ms-hug


mererid
1 week ago

Haven’t tried Sativex, and I DO live in Wales!

It’s not that easy to get. It’s the last resort if absolutely everything else fails. Including your liver, apparently. 😉 That said, the different health boards within Wales might have different approaches and attitudes toward the prescribing of Sativex.

Some people get relief from CBD Oil instead, though. Have you tried this?

Baclofen didn’t work for me, and I gave them a good two months. Gabapentin and the like wasn’t so good for me either, but I know they work for lots of other people. Trial and error.

Like you, I also get the MS Hug, and in the end the neuro decided to prescribe me Clonazepam, which I take twice a day. I also get a handful of Diazepam with my monthly prescriptions for emergency relief when the Hug is catching on a particularly bad day, despite the Clonazepam. Most days, the Clonazepam is enough though. They also help with my leg spasticity and muscular pain. For me, the Clonazepam has been the most effective thing I’ve tried for the MS Hug, along with Diazepam, which they’re a bit more reluctant to dish out. There are risks with both, mind you. They can be addictive for some people, (I haven’t found this to be the case, though), and they can make you drowsy (I take Modafinil for fatigue, which helps a little with this).

You can take them along with the Amitriptyline for nerve pain.

I know someone who has been given Sativex for leg spasms and he isn’t sure if it’s working yet or not, but he’s only been on it for a short time. Everything needs time, I guess.

The MS Hug is horrid and it causes so much anxiety when it happens, almost like you can’t take a full breath.

I hope you find something that will work for you.

Mer

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