Hi peeps! I’ve just joined and hoping you can give me some sugestions as to how to manage leg spasms. I was officially diagnosed a couple of years ago after finding out by accident from the GP that I had MS after going in to see her for something else entirely! I then demanded an MRI and Lumbar Puncture (a bit drastic I know but with something this important I wanted to be sure) after which it was confirmed. My MS Nurse said I have Benign MS but I am still very shaky and my balance is very bad, I also get the occasional horrendous Neuropathic pain in my arms which simply takes my breath away! But the most irritating symptom I have at the moment is that I get smasms in my legs and torso when I move after sitting for a while and especially first thing after waking, it takes me about an hour to get my legs working properly again. I’m wondering if any peeps out there can give any tips on how to manage them.
A diagnosis of “benign MS” can only be made retrospectively, after (I believe) at least ten years without problems!
So, no disrespect to your nurse, but nobody can be told just two years after diagnosis that it’s benign. This seems to be worryingly on the increase these days. I realise it may be an attempt to reassure people, but it sometimes has the opposite effect, of leaving them feeling as if they don’t really have “proper” MS, and there is no rational explanation for their symptoms!
Your MS nurse should be addressing your symptoms, not leaving you to think you shouldn’t really have any, as it’s “benign”.
Spasms can be treated by physiotherapy, or medication, or a combination of both. For milder cases, some stretching exercises (which you should be shown) may be sufficient, along with some DIY remedies, which could include eating plenty of bananas (for the potassium), drinking tonic water (for the quinine), or taking magnesium supplements - particularly at night, if the spasms tend to strike then.
However, if they’re severe or frequent, the natural approach may not be enough, and you may need prescription medication.
One of the most common is Baclofen, which I’ve been on for a couple of years now. I was very pleased with it at first, and have never had noticeable side-effects (though some people do), though it is just now ceasing to be as effective, and I may have to discuss a switch with my consultant.
Do ask your MS nurse, though. A “benign” label, even if you did satisfy the necessary ten trouble-free years, should not mean no treatment. If you have symptoms, they should be getting treated, just like anyone else with MS. Very few people make do with nothing - especially as time wears on. It would be lovely to think we could all get by with positive thinking, and a few homegrown tips and tricks from the internet, but that’s not always possible.
I hope you get something sorted out.
Hi I had them too…I now take a magnessium supplement and use magnessium oil spray which together with a banana a day and a glass of tonic water with added quinine in (minus the gin !) when needed, all seem to have done the trick and I rarely suffer now. Hope this helps !! Xx
Hi Anitra! I have also had Epilepsy for about 40yrs the last 10 have been virtually controlled with meds but I’ve been having several weird things going on that I’d thought to be side-effects, of course some of them would be but the occasional fall where I felt I couldn’t move my feet to stop myself falling, worsening of balance, the horrific neuralgia pain in both arms etc. made me feel as if something wasn’t right. It took getting hold of my hospital notes and MRI scans to realise that my neurologist had known that I had a degree of de-myelination since my first scan 30 years ago but as I wasn’t presenting any real MS symptoms was never told. If it wasn’t for a locum GP saying “I’m glad to see you’re in remission” I would never have found out. My nurse has suggested medication for the pain but would have to be taking it constantly and as I only get them now and again I don’t want to take anything apart from Neurofen, (I’m on a lot of anti-convulsants). I will take your advice and try some bananas and tonic water etc. though, thanks a bundle.
Heyyy MrsH! What, no gin? Ohhh, you party pooper!! I’ve never heard of a Magnesium spray, can I get it from a chemist, supermarket or the Doc’s?
Hi I got mine from Amazon…although be warned, I made the mistake of buying a menthol one first and It absolutely stank !! Hubby smelt it and said no way, ever, ever are you coming to bed with that on !! It’s Better For You Magnessium Oil spray…the original one !! I think it was Ellie who recommended it to me and I can never say thank you enough. It works within minutes of the spasms starting. It’s brill. Xx
Ps gin is fine…I was joking !! Only because at one point before I discovered the wonders of magnessium, I was supping the stuff all day and night and would’ve been completely sloshed if I’d put gin in !! Not sure you’d notice the difference mind !! Xx
I’e got to try this stuff! Thanks for the tip!