So this Wednesday I will be getting assessed to see if I can try Sativex .
Not sure how it will go but not holding out much hope even though it’s licenced here in Wales on the NHS for MS .
Just wondering if anyone has gone through the assessment process ?
Bit of an update to my assessment.
Saw a spasticity specialist Wednesday who went through all the current options open to me at the moment which included Sativex, however she did not think that Sativex was the best option to immediately go with, as she didnt think it’s success rate was as good as some other meds that are available, but she did say that it’s still an option if the meds she suggested dont work. She took into account that I’ve tried already Baclofen , Gabapentin & Pregabalin without success, so basically she wants me to try Clonazepam at a low dose at night, then after doing some blood test in about a 2 weeks time she said to start on Tizanidine, again on a low dose to start with.
Looking further down the road she said theres a Baclofen pump, which in her opinion was far far better than Baclofen in tablet form, I think this option though is a long way off at the moment.
Also mentioned was FES treatment for my dropped foot if needed.
Although a little disappointed not to try Sativex straight away, I’m more than willing to try the other meds first as it gives me the opportunity to say in the future that I’ve tried & ticked all the box’s in regards to NICE guidelines.
Even though Sativex is available on the NHS here in Wales for MS it seems as though all other cheaper options need to be tried first.
I really cannot understand why anyone who is diagnosed with MS is not immediately put in contact with a spasticity specialist from the start, after all spasticity/spasms are probably the most common symptoms of MS.
Maybe it’s just the way my local MS clinic works ?
So anyway, I’ll try these new meds see how things go and take things as they come.
Hello, Thanks for posting this. I too have spasticity and never seen a specialist on it. I have tried all the tablets too and am on nothing at the moment as nothing really helped. I was never offered Clonazepam. Tizanidine just put me to sleep. I do not have spasms - just stiffness
I get stiffness more than spasms too. I was pleasantly surprised by how helpful this consultant was and how switched on she was with regards to MS. I cant get my head round why at point of diagnosis we are not automatically given to opportunity to speak to specialists within spasticity ? I didnt get any benefit from Baclofen, Gabapantin or Pregabalin. Apparently, according to this consultant, Clonazepam is to help with spasms and will help with restless legs and help with sleeping, she has recommended that I take this early evenings to help when my legs get a bit twitchy and she thinks it may help during the night when I sometimes wake and go very stiff allover for a few seconds. The Tizanidine is more for the stiffness ?
I think Cloneazepam is a brilliant drug. I was waking up every night with my legs going into spasms before I started it. Now I take one 500mcg at lunchtime together with 20mg of Baclofen, another 2 x 500mcgs at about 8pm together with another 20mg of Baclofen and 30mg of Amitriptyline, then a last 500mcg when I go to bed with another 10mg of Baclofen. This means I mostly don’t get any stiffness and spasms. The rare time I do, I sneak an extra Cloneazepam. Or take a Zopiclone last thing.
These days I generally sleep pretty well. I was bothered at the start that with a benzodiazepine, often people end up having to increase the dosage in order to get the same result. But this hasn’t happened. I am generally sticking to 2 mg of Cloneazepam per day and have reduced my Baclofen from 80mg to 60mg per day as a result.
I hope it does what you want it to jactac.
Sue
Thanks Sue.
Do you get stiffness throughout the day , ie walking ?
Even though I found this consultant very helpful, she has confused me a little with the regime that she has written out for me when starting the Tizanidine.
I think it reads something like starting on 2mg at night for a week then second week add 2mg mid afternoon then third week another 2mg in the morning, and so on .
Increasing the dosage each time until finding a relief.
At least thats how I’ve read the instructions but I’ll ring the clinic Monday to double check.
It’s a bit different for me. I can’t really walk, I manage a few metres a few times a day, with FES and a walker. So with no stiffness, I’d probably fail utterly to stand on my feet at all. I’ve not had any adverse effects from Baclofen in terms of weakness, meaning I can’t stand at all. But then, I titrate Baclofen (and all my drugs) throughout the day so I take more of everything in the evenings. And I’ve not taken Tizanidine. So can’t comment on that. Sue
With me its like as the stiffness gets worse the further I try to walk, which then brings on muscle fatigue, so after about 100 or so steps, probably less if I’m honest, I can really feel the strain to pick my legs up and stop my feet dragging.
There was a point up until a few months ago that I could take a little rest then go again for a little while buts thats completely gone now, I get the stiffness and weakness as soon as I stand up and try to walk, which like I say just increases with each step.
Took my first Cloneazepam last night but it didnt seem to help, but its small dose and early days I guess.
And that is the big conundrum. If you don’t walk at all, your legs will weaken and you’ll be able to walk less. But if you walk too far, your legs get knackered and you end up unable to walk at all. At least, that’s been my problem. So I stick with my teensy weensy bit of walking, simply to keep able to get up on my hind legs and to help with transfers etc. But I just can’t extend the amount I walk at all. Every time I walk a little bit more, I find I can’t walk at all the following day. Plus, as I have to use a walker, I lean heavily on the handles and that can (and does) lead to shoulder and upper arm muscle injuries / weakness. It’s a bugger, this walking business. And adding stiffness and spasms to the mix together with drugs and the potential for adding muscle weakness, means we each have to work out our own ‘best solution’. In my case it’s a crap solution, but it’s basically what I’m stuck with. Sue
I am lucky that I do not get spasms at all even during the night. When I go walking too far my calf muscles contract too much and pull my foot down so that my ankle is rigid. Quads stiffen too making the knee hard to bend. This is how it all started for me as I noticed stiffness in the calf when I walked for about an hour. 5 minutes rest at that time usually sorted it. Now the calf have become very tight although still gets tighter when I walk. I have tried the tizanidine and that just acted like a sleeping tablet so could not use it during the day.
Moya your symptoms sound similar to mine, certain muscles groups acting out of sync.
Th specialist I’ve just seen spoke about trying Botox injections aimed at specific muscle groups, but only after going through tests to see which muscles need treating, but before that se wants to try some meds first.
I do have this thing in my head that keeps telling me to “use em or lose em”, so even though I find exercise hard I will try to walk as much as possible, but it so so easy just to want to stop and sit down.