Hi all, I was diagnosed with relapse emitting MS almost 3 years ago. Today I experienced something totally new, I had some usual (for me) symptoms, but then suddenly it felt as if every nerve in my body was firing and every muscle was contracting in spasm at the same time, I was on the floor on my knees, I couldn’t even open my hands, they were clenching into fists. The episode lasted about 1 minute and after I felt as if I’d run a marathon. I was just wondering if anyone has experienced anything similar as I have experienced localised nerve pain and muscle spasms, but nothing even close to this.
Hi there
That sounds quite frightening! I hate spasms, I just never know when they’re going to stop and a few seconds feels like minutes. I’ve never had everything spasming at once like that though. Hopefully it was just a one off, if it happens again give your MS nurse a ring because there are meds that can really help. Fingers crossed for you!
I was diagnosed with remitting relapsing M.S.
Just before my 18th birthday at 61, I now have secondary progressive. I have suffered from spasms for most of that time, I started having problems with my bladder about 30 years ago
, it started with retention when I was admitted to hospital for a fortnight at a time to have things sorted out, then I used an intermittent catheter to make sure my bladder was completely empty,for a while til my disability made it impossible to use. Twenty five years ago I had a supapubic catheter fitted, this solved the problem of my bladder emptying properly but just made the bladder spasms even worse. Then I found bladder botox treatment, you can have this with or without a catheter a camera is inserted either through your urethra or catheter hole and then they inject 20 injections of botox all over the inside of your bladder, it is done in an outpatient appointment while you’re awake, although it is uncomfortable at the time it is no worse than 15/20 minutes of bladder spasm, you bleed into your urine for an hour or so, but I get relief from spasm almost immediately they say it can take upto a week, when I started I hadit every 9 months now I have it every 6 months and although I may get occasional spasm, usually if I get a urine infection, it is in no way like the spasms I use to get.
Before I started I tried number of medications but they didn’t work like the botox did. I still take Tegretol or Oxybutinin one tablet a day.
In my mind an uncomfortable 20 minutes twice a year is better than the bladder spasm
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Hi speakingsquirrel, I’m totally with you, I have Botox every 5mths and it does help, I did have a supapubic catheter fitted, but mine kept bypassing, one time 9 times in one day, so I decided to have it removed, which I was sorry about as it helped not only me but my hubby throughout the night as we attached a bag and didn’t have to get up, maybe one day I’ll try it again.
Jean
I colopsed on friday ,ive just joined by the way , i havent been told its m.s but from my history i guess it is , the spasams from my neck were terrible ,feeling sick , and tingles down my legs and arms , fatique , ive got to go for a mri brain scan again ,had one 6 yrs ago .
Hello all, I searched spasms and this thread came up @yojojo that sounds very scary and I hope you don’t have any more episodes.
I was diagnosed with RRMS a few months ago and recently have started getting spasms in my body, which are momentary and not painful. But am wondering if this means something is shifting. I am really fortunate and only really get fatigue and the odd loss of balance. But will these spams get worsem an sure it is hard to say as we are all different but would be good to get thoughts.
It’s different for everyone, and hopefully if you’re on medication you shouldn’t experience anything new for a long time. Spasms are weird, generally more annoying than anything for me. I’m lucky the pain side of everything has calmed down for me in recent years but I still get intense pain at times.
For me cutting out sugar made the world of difference to the intensity of everything. I guess I am really intolerant to it. It started getting to the point that when I had sugar I couldn’t move my neck and everywhere was painful.
Health professionals are always going on about a healthy diet but if you are eating healthy/not eating stuff you’re intolerant to it does make a huge difference in the day to day.
Thanks @sunrie2 . I am not on meds yet but will am booked in for IV drugs in a few weeks. I do generally eat healthy and try and stay active.
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