I DIDN'T REALIZE I WAS POSTING IN A MS FORUM. OOPS! THEN I TRIED FINDING A BRAIN INJURY FORUM ON MEDHELP BUT COULDN'T FIND IT. THANKS FOR THE INFO!
I am not sure I know what life is like with MS, without spacistity any longer? I use Baclofen. Take it when I need it, as much as I need it and as often as I need .... although I do try to keep is minimal!
I find my feet curling up with swaying toes which have a preference for starting at 4-5pm (as I try and drive home). I have RRMS for almost 4 years, I am 31 years old. Sometimes it even gets so bad that I curl up on the floor and pray the spasms will go away, the pain is excruciating! My Fiance trys to straighten my toes out but it only makes them more active!
I guess that I am individual in that I had cauda equine syndrome in 2007. (Cord compression at L5-LS1) It was my left leg most affected, and the leg I have most difficulty with spasticity currently. I have mentioned this on several ocassions to my neurologists and he is not concerned: Either because A) its part and parcel of an MS symptom B) Baclofen has been prescirbed or C) it relates to previous cord compression......
I am not sure which applies ...... But I find 1) Baclofen does help (placebo effect or not .... and 2) This is a symptom of MS (which I did not ask for) but was given regardless and so while annoying I get on with it.
My only advice is to "Take Everyone's Advice on how to individually deal with this irritating, annoying painful symptoms. For me its to take Baclofen and stretch it out until its gone! (be patient - this can take time),
Hey - between all of us here: something might help you work it out!!
CoCo
I'm not sure if these forums have a lot of activity, but it's what I came across on first look. The last one is here on Medhelp's forums. I will also look for some medical stats/cases too regarding your question.
http://www.traumaticbraininjuryforum.com/index.php?PHPSESSID=9l4kcfn37kah1hv31hd5dsamj3&board=10.0
http://www.braininjurynetwork.org/braininjuryforums.html
http://www.medhelp.org/forums/Head--Traumatic-Brain-Injury/show/282
Hi Amyoro,
Thank you for joining us. I'm sorry to hear about your TBI. Depending on the severity, I do believe that your spasticity can be somewhat more severe (like you described about it curling/contracting) where overtime that can even affect your bones - that must of been so painful.
I can poke around some sites and see if there is anything worthy where recovery is concerned.
My initial thoughts are that if there has been some improvement w/the curling, then never give up home that you can continue to recover. Our brains are amazing machines and I'm glad you are here to type and reach out to us. I'll look too for some users sites where others are sharing experiences.
Hi and welcome to our little corner of the web.
I think one of the major differences between TMI and MS is the cause of the spasticity, so basically I dont really think MS recovery stories are going to be all that helpful to you. MS spasticity doesn't usually get to the extent that TMI does, MS is more a slow progression type. Stroke recovery stories maybe more in line with what you experience, might be worth posting your question on their forum too.
I would recommend you read up on 'brain plasticity', I am sorry i couldn't be very helpful.
Cheers.........JJ
DO YOU PREFER CAPS? I'LL WRITE IN CAPS FOR YOU.
IT LOOKS LIKE YOU BROUGHT UP EXACTLY WHAT I WAS GOING TO SUGGEST. BACLOFEN WORKS VERY GOOD FOR ME, WELL AT LEAST ON SOME OF MY SPASTIC AREAS. I WAS ALSO GOING TO SUGGEST BOTOX, BUT IT LOOKS LIKE YOU'VE ALREADY TRIED THAT.
I'D ASSUME THAT YOU'VE ALREADY TRIED PHYSICAL THERAPY SINCE YOU HAD AN INJURY? IT SOUNDS LIKE YOU ARE JUST A YEAR OUT FROM YOUR INJURY. I KNOW FOR INJURIES, IT MAY TAKE SOME TIME FOR YOUR BODY TO WORK IT'S WAY OUT OF IT. I STILL THINK THERE IS A LOT OF HOPE FOR YOU WITH THE SPASTICITY. I'M SORRY THAT YOU'RE HAVING A HARD TIME WITH IT. STRETCHING YOUR SPASTIC MUSCLES MAY HELP IF YOU CONTINUE TO DO IT.
GOOD LUCK,
KELLY