Locked leg muscles. Botox, anyone?

Ankles to top of the hamstring and thigh muscles, right leg. This occurs anytime I'm upright. Neurologist says it's increased tone and spasticity. He has me taking zanaflex and valium. He's repeatedly spoke of Botox injections, however I am unable to find information of approval to use Botox injections in the Lower Extremities of adult lower extremities. This being due the size of the muscle mass affected. The Z is so effective, it prevents me from walking or doing anything else, so I take it at bedtime. The V works as designed, making me sleepy. This enhances the chronic fatigue I enjoy from my leg difficulties.

Oh...for those who may not experience this, or have not, think back to a time when you may have (1) done a 10K walk-a-thon but were not ready to do so; (2) began new weight training for legs, and it got good to you. The next day you realized it was a bit too much; (3) you got lost in a new housing development and kept running because you knew the exit was "just around that next turn; or (4) you went hashing and din't realize that the three high hills were part of the trail.

Ultimately, the above-noted activities (and many others not noted) result in the leg muscles being in an "activated" state. This is the way it is for me whenever I am upright. Additionally, when crawling about the home (it's exercise, everyone...really) LOL, the right leg muscles will not release or relax enough to allow forward motion. To stand, I must manually place my hip-knee-foot group into a 90-degree position.

Anyway, all the blah blah blah aside...please respond with your insights about botox and its usage as concerns MS. Thank you one and all.

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21 Replies

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  • Hi Joe, I have never heard of Botox for the major muscle groups. One of the reasons I love this sight is that you get to research about it. I have heard of it for the usual face, winkles etc, and my mum had it in her bladder that worked really well for incontinence, but for legs? I know what you mean when your leg locks and your down on the floor, my problem is getting my right leg to bend. Anyway I look forward to hearing what others has to say about it. Take care, and keep us informed please, thanks Jimeka

  • Jimeka, thanks for the reply. Like you, I've researched about botox usage relative to MS. Botox has been used in the lower extremities of children, but that has only been due to the fact that the muscle mass is small in size. Yes, botox is used in the bladder. A member of our local MS group gets these injections. They help her. At one PT (physical therapy) session I attended, I was repeatedly told to relax ( lying on my back), while the therapist attempted to bend my leg from an extended position. Next, while on my stomach, the effort was made to bend my leg at the knee. I was literally lifted off the table from ankle to mid-chest. All leg muscles were locked tight. All in all, no explanation is available. So, I will continue to research online, ask others if they have ideas about this situation, and pray for a cure to MS and other neurologic illnesses. Lastly, I will continue to crawl about the house like a child, forcing the hamstrings to try and function; sit cross legged when reseaching or watching the telly (cartoons and series shows); and try to walk the carpeted rooms of my home, without touching the walls. If I fall, well...there's a berber carpet on which to fall. If I happen across some information that seems to have benefit for all suffering these leg difficulties, I will definitely post on the site. Stay well.

  • Ugh was just a week ago when someone brought up about the botox in the legs. I was interested because lm allergic to Baclofin. They said that the botox for the leg spasms ugh l wish l could remember more. Hopefully someone will remember lol sry

  • Thanks for the info. You've given me a timeframe for looking through the past posts. I really want to help find some relief from this situation. Seems like others have this problem, too. Take care.

  • My husband had botox to his left arm during 2014 - 3 visits and 2 times 2015. His left hand is clinched and does not open. Due to his Neurology Group splitting up, the shots had been discontinued. Finally a new group formed with the doctor who administered the botox included. She only works with patients that have a movement disability (not cosmetic). Two weeks ago we had a visit and she administered 11 injections. 2 in left shoulder as it has started stiffening; moving down the arm 5 other injections; 2 in between the thumb and pointed finger and last 2 in calf muscle left leg (he has drop foot and leg doesn't bend easy). These injections are nothing like cosmetic injects, the botox is injected into the muscle. There are nerve sensors attached at the sight of injection. During each injection the doctor and nurse listen for the nerve involvement (they want the injection there). No it is not fun. The first week, he experiences flu type symptoms, just what you need when you have MS. We are now in 3rd week. Waiting to see results. This is a gradual process. He also was on Baclofin until 2011. I'm April, 2011, He had a pump inserted under skin right side right above waist, catheter line goes around right side, catheter injection is in between L3 and L4 into spinal line to mix with spinal fluid. Used to be Baclofin refill every 3 months, in April, 2015, doctor changed to a concentrated form, Gablofen, refill every 6 months. Pump has to be changed our every 7 years, we have that facing us end of 2017 or first of 2018.

    Sorry, this runs on, BUT, I hope and pray I have given some insight. Will this work for you, I do not know. This is our experience. You will need to do what you feel will work for you. Bless all of you.💗💗💗

  • Thank you kindly for your in-depth reply. I have read and heard about the injections in the upper extremities, at times being very beneficial. I appreciate your having noted about the use of the nerve sensors during the procedure. That part of the procedure was not utilized when I received my botox injections. It was more like a dart board environment, because "there's so much muscle there". I will continue researching and praying. Take care.

  • This leg contraction pain is new to me. I feel it after even a day of low key work, but feels like I just biked a mountain bike race. I'm going to try and see if any of my stretches from PT help, but it really hurts when I try to sleep at the end of the day!! I haven't lost control of my legs, just painful to walk or bend my legs. I really hope it doesn't get worse, the last thing I need is a new symptom.

    Best wishes to everyone. Thank you for sharing.

  • Ok, here is my input. Several people in my MS support group have had Botox injections for leg and hamstring issues. It has worked for them. Another lady in my group has had "needling", fairly new on the scene I think. It's similar to acupuncture. It has worked for her.

    What has worked beautifully for my hamstring spasticity is Marinol, the manufactured form of THC. If I get to where I can't walk, I start with it and by day two I am good. I continue w the Marinol until I am sure I am ok, several days, and stop. No, the Marinol does not make me high at all.

  • Hi, and thanks for your input. Perhaps some of the folks in your MS group, who have had the botox injections, could put in a couple of words about their experiences. A number of us are looking for a way to overcome this muscular problem. I really appreciate your mention of the needling, as I'm soon to consult with an acupuncturist next month. The Marinol sounds like a good possibility, too. Thanks for so much info.

  • I will certainly ask my group to give me a few words to pass along.

  • I was like you. I could not bend my right leg and I had to swing my leg out to move it. My dr suggested botox because my leg would only bend when it wanted to. I meet with a dr next month.

    I don't think its something I will do because I listed this question on the other MS site and I didn't get good feed back on it. With the help of PT, Baclofen 30mg (3 times a day), Tizanidine HCL 2mg (3 times a day), and neuro muscular massage I am able to bend my leg,

    I also have the Bioness L300 plus the thigh cuff helps to bend my leg when fatigue sets in.

  • I had Botox for bladder issues twice, but ineffective; have not heard about it for leg spasticity. I take Baclofen 30mgm 3times daily & Valium PRN; I was taking Zanaflex, but stopped it, because it wasn't really helping. My left lower back spasms are bad & I take Nucenta for that & use heating pad all my waking hours (sitting in wheelchair all day doesn't help, but even if I lie down, it doesn't help) . My bladder issues are bad now, between incontinence & spasms (despite DDAVP, Mybetrig & Toviaz, I'm @ my wits end & my urologist is phenomenal, but doesn't know what else to do & he is always doing research to see if anything else is available. My PPMS has detoriated so fast since January & no hope on the horizon.

  • There is always hope, keep fighting.

  • I have had PPMS for 32 years. I also had Botox injections in my bladder, which lessened the spasms, then eventually had a supra-pubic catheter surgically installed. Relief at last! I use a leg bag, the catheter is inserted into the bladder a few inches below my belly button, and drains into a leg bag. Bye bye shorts, miniskirts and sexy up-to-there slits! Hello freedom to bypass restrooms. I empty my bag 3-4 times a day, no issues with bladder infections, and no more rushing (that's a word I no longer use at all) to a restroom, home or outside. Works for me, but not for everyone, I realize. Best of luck finding what will work for you.

    God Bless, Bea

  • I'm on Baclofen now. I had read an article in a neuro mag at my dr office a few month ago about using botox for inmobility. They were speaking about hands and arms. I haven't heard of using it on such large muscles. I've used baclofen with flexoral(think spelling is right) when I've experienced severe spasms

  • I read that article, too. The mag comes to my home, monthly. I have yet to find endorsement / approval for use in the lower extremities, however, there appear to be successful uses of botox in the legs. The choice belongs to the patient.

  • I get horrible leg cramps that make me scream, but only while lying in bed. No neuro has ever suggested botox for them, although they did for my migraines and it didn't work.

  • I get Charlie Horses soooo badd they land in my feet,my calf and the right side of my lower back. Muscle spasms are what Doctors call them. They hurt tremendously. The Doctor prescribed Flex-er-rall thats how its pronounced. It helps by putting you to sleep, which is a welcome ideal. So now I take one everynight to keep those muscles relaxed.

  • Yes super painful night time calf-cramps are a new thing for me. Scary painful. They wake me up mostly in early morning. The baclofen and tizanidine I've been taking for years doesn't seem to touch them.

  • Hello michaelbarnes, it is MSFIGHTER saying welcome to this wonderful chat room and the family that revolves around! May I be the first to wish you to join in our conversations and to have input and find out information about our common enemy, MS.

    I to used to get awaken a lot in the mornings to the joy of severe Charlie Horse type cramps most especially in my calf muscles and my arch muscles in the bottom of my foot. The pain would be so severe it would take my breath away and awaken me from a dead sleep.

    Being the ex-athlete that I am I realized one of the main sources of severe cramps was low potassium levels. As an athlete before tournaments and games i would eat foods, mostly fruits like bananas and grapes etc., that had heavy concentration of potassium. So to make a long story short I changed my breakfast menu to having protein in the form of two hard boiled eggs and some type of fruit like bananas, grapes, or melons, etc.

    I realize everyone's body and MS react differently to different therapies and foods. As long as I don't forget my fruit, knock on the wood really quick, I have been blessed to have had the cramps go away. Not part time but all of the time. If I run out of fruit and don't get to the store for just a day or two the cramps return with a vengeance.

    Try the fruit and see if it helps. And please keep me informed of the status of your cramps and if the fruit helps at all.

    I'dI'd like you to remember that together we are stronger and we are all in this fight against this dreaded monster, MS, together. I invite you to become our newest Ms Warrior. As an MS Warriors we never gives up and never give in, we simply fight on, fight on like Warriors do!

  • Good morning and thanks so much for the cramps-tips! I do eat lots and lots of fruit as well. MS has turned me into an obnoxious health nut! It's not so easy to know what to do when the cramps wake me up! Move!? Don't move!? Funny. Lately my doc upped my bed time baclofen and also spoke of trying TUMS. Haven't tried the TUMS yet. Maybe it's for the calcium? Just not sure. Cheers.

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