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