Hi
I have had MS now for nearly 30 years and over the last three or four years my legs have started twisting together, making it difficult to get out of bed but when I do eventually get out of bed, my legs start shaking uncontrollably. I have spoken to a local MS NURSE who said I just need to learn to live with it, which isn’t very helpful does anybody have any ideas of the medication? I could try to alleviate these annoying symptoms?
Thank you, Clyde
Hi Clyde, sorry to hear of your problem and I’m really sorry that, other than what’s on the MS Society and similar websites, I don’t have any great solutions to suggest .
Baclofen seems to be the ‘go to’ treatment for spasms and stiffness. I have some slight problems with leg stiffness in the mornings and once asked my MS Nurse about Baclofen. She advised that a bit of care is needed in its use - it’s a general muscle relaxant - so I’ve stuck with morning stretching exercises.
I also saw a physio - both a private one and NHS ( for which there was a long wait). Both physios gave me some leg exercises to do and I think they have helped ( and helped more generally with walking).
Hi clyde,
That’s an incredibly unhelpful thing to say, blatantly untrue as well. I would seriously Think about complaining about it, because whoever they were they obviously have no idea about what the job is, or about symptom management. That’s incredibly frustrating, and I’m really bloody annoyed for you.
One of the best things to help with spasticity is baclofen, which I’ve been taking for a few years. One of the difficulties with baclofen is that a lot of it is absorbed Long before it reaches where it is needed, so you end up taking a lot of it. I had a baclofen pump fitted last year which is a small reservoir under the skin to the right of my belly button. It then has a line round to the spinal cord so that the baclofen is released at exactly the right place, so the dosage is micrograms. I get mine topped up three times a year at the hospital, it takes about 10 minutes. The bruising from the operation was spectacular but other than waiting for the stitches to heal there was no pain or any problems.
I don’t know if my MS team in Cardiff are unusual, but they have a whole team who specialise in pain and spasticity. We investigated Botox in my thighs for a few sessions, but it couldn’t make enough difference. It is also via this team that I am prescribed sativex, which is cannabis. I take it in the morning and bedtime and it helps massively with my legs kicking about, and general spasticity in my arms and hands.
None of it has cured the problems, but I reckon it’s about 90% better. There is a lot that they can do, so make sure to go back and ask again preferably a different nurse, and speak to your neurologist if you still can’t get any satisfaction. There’s no need to put up with that much pain.
Good luck with it all👍🏻
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Hello Clyde,
Well done on reaching 30 years of having this rotten disease, I’m coming up to 25 years soon.
I’ve noticed my ataxia worsening in these later years, legs just seem to go all over the place just fighting to keep my balance.
As has already been mentioned Baclofen, I’m now on 30mg daily initially 15mg, and physiotherapy exercises may help to alleviate your symptoms.
Best regards,
JP