Search Discussions

Main Content

  • iandavid27
    Hi all,

    Has anyone suffered with widespread muscle twitching/fasciculations due to their MS? It started in my calves but is now widespread, even eyelids, cheeks, torso etc.

    Thanks 
  • MS_Navigators
    Hi there.  This is one of the most common symptoms of MS.  If you'd like to read more, there is more information on our website here.
  • David-G
    Is there a difference between fasciculations and "spasms?" I'm new to all this, but have been experiencing both slight tremors and involuntary movement in my arms and legs. They are small, jerky movements in mostly my hands and legs, occasionally making me drop things or kick something unintentionally. Is that the twitching/fasciculation being referred to here?
  • lillivonshtupp
    Yes, yes I have. It’s worst at night while falling asleep. But yes limbs twitch or shake randomly. My last flair had my right leg tensing uncontrollably first thing in the AM & any attempt at walking tightened me all up. I did IVS for 5 days, that helped loads. I’ve had physical therapy & Micheal J Fox tells a story about letting it happen. My PT had me “go into it” & “let it happen” on the table one day. I shook for a few minutes & stopped. Then I was relaxed after that. So I do that on purpose all the time now. We are all electric and fighting it was exhausting. I let my leg kick when it wants to, and then it’s done and I’m “normal” for a few hours. PT said baclofin wasn't good b/c it stops the electricity. Like the cheetah needs bursts of electricity to run fast, we shouldn’t medicate that function away. Just let it run it’s course. IDK if that’s helpful but it’s one of our fun side effects. 
    Namaste
    Erin 
  • jasonprestovfd
    Yup, have had it since about a year after my diagnosis. It is annoying but you get use to it. I get it most in my legs but have had it in my arms, face (the side of the nose looks funny because it flutters around), eyelids, chest, sides and back. For me when it's in my feet its painful, but everywhere else is just annoying. 
    good luck and rest easy it's a very common problem with MS. 
  • maria1
    Twitching and fasciculations are the same except one they say is lactic acid buildup reaction after exercise?? Tell your nerves to stop doing that, practice muscle relaxation exercises, soften the muscles as much as possible. The nerves give the orders and you can give your nerves orders. Remember the mind controls it all, take charge of your mind, tell it what to do, Give it orders. It is about breaking the habit, the automatic response.

    Can you twitch your nose on command, can you flex a muscle on command, can you cross your eyes, these are all things kids learn to do. When I was a kid, one of the first stores I got out of the library with my new card was Uncle Wriggles, about a guy who could wiggle his ears, I spent hours staring at my ears in the mirror until I could wiggle them. Stare at your leg if it is where the twitch is, stare at your arm, relax relax relax tell it to relax. On a trip to Coney Island I saw a kid with no arms write with his toes holding a pencil. I practiced to pick up a tissue staring at my toes, you can control your body, it just takes practice, unless you like being Dr Strangelove! You got something better to do? Nah, it use to freak me out, like my leg was not part of my body. You can control your breathing, how do you do that, think about it, you cant see your lungs yet you can tell them to slow down or deep breathe, imagine, you can swallow when you dont breathe and breathe when you dont swallow, how do you do that??? Yeah, it is great to let it be, to see if that works to fix the twitch, but when you let it be to the point of annoying, stare at it and tell your mind to fix it. It aint rocket science, it is mind control, take control of your mind, it may not make it perfect right away but it will make it better, and slow the process long enough for you to have some relief.
  • jasonprestovfd
    David, 
    what you are describing sounds accurate to me. I have dropped a few glasses with no reason other than it was like my hand forgot I was holding something. 
    to me a spasm is like this:
    I get things like, a pinch (like a bug bite) then what ever limb it's on jerks iinvoluntary. I get the odd muscle movements like one muscle will twitch and move around by itself. Even though the muscles around it dont move at all. 
    I also get major muscle cramps.  When I get this in one of my calfs it takes all of my body weight on one foot to be able to stretch the muscle to get it to go away. Sometimes I get this in my entire leg. One time that this happened I needed my son to help me to force my leg to bend. He was scared to push that hard he said "dad I feel like your leg is going to break before it bends". 
    over the years ive found that the cramps and spasms are worse when I'm cold. If my feet get cold it's a guarantee that I'm going to have very painful cramps in my feet. Occasionally I will get this in my sides. One time my right side of my torso had it so bad that I bent over kinked. The only way I can describe it is i looked like the front of the letter K.
    i sinsearly hope you get resolution to whats going on soon. It took me a year to get my diagnosis.  Good luck and keep us posted on how you are doing. 
  • iandavid27
    Thank you Jason.

    Yeah, it’s really annoying,
    but nothing more than that. I spoke to my neurologist and he said that MS doesn’t cause symptoms like this. I was scared I had ALS but I haven’t lost any muscle size or strength...in fact I’m getting stronger and my 2 EMG’s in the past 6 months have been normal.
    I flew to the UK to see another MS expert and he said the 9-10 lesions on my brain are not in typical MS places. Coupled with my negative OG bands, he said it’s unlikely to be MS. However, I’m 42 and he said the scan was definitely abnormal for my age.
    I had a positive test for small fiber neuropathy, but this doesn’t cause lesions on the brain or twitching etc.

    Jason- how many brain/spine scans did you have before the final diagnosis?

    Thanks

    Ian
  • jasonprestovfd
    Ian,
    I had an MRI of my brain and cervical spine,  it showed 3 old and 3 new brain lessons and 3 new on my spine. With that and my symptoms (blurry vision in left eye and numbness in both arms from my shoulders to my finger tips and both legs from my hips to my toes). I got my diagnosis, I've never had a spinal tap. 
    It took a year and my first big flare up to get diagnosis 
  • iandavid27
    Thanks Jason.

    Have been having symptoms for over a year, but when I finally got an MRI scan my worst flare was actually over. Like I said, they found 9-10 'old' lesions on PV part of my brain. Spine was clean as was brainstem etc. I know that I have something wrong with me 100% as the day to day symptoms are so unpredictable and strange. Hoping to get another brain/spine scan one year after my last one and get a diagnosis....or rule it out completely.

    Thanks

    Ian
  • mstammie69
    Yes....almost every night ( the las 32 days) I have had spasms/twitching constantly in my right calf and thigh. At first I assumed it was because of my floating right knee implant (that will be replaced again in Feb, 2020) but after seeing my Nuerology Dr, it’s definitely M S doing its thing. 
    So every night After I lay down I start talking to my M S, asking for just 1night without twitching or spasms. I actually beg, Prey, Cry and or chat telling Them(My M S, ) to GO AWAY....AS we kno it’s all in our head anyway.
    This is such a battle for me because I am covered with my GREAT UNCLE ARTHRITIS...
    Pain is always present...
    GOOD LUCK and GOD BLESS to all❤️
  • joeysdad
    It is so nice having a site where people know exactly what you are going through. I have been taking Baclafen and it has worked pretty well for my spasms. I still get them, but not near as often. The worst spasm I have ever had was a jaw spasm. It has happened twice and the first time I experienced it, it was one of the scariest things that has ever happened to me. To be talking to someone and all of the sudden lose control of my jaw. Sounded like I was having a stroke. Ever one else ever experienced that?
  • jasonprestovfd
    I haven't experienced it in my jaw. But I completely understand what you mean by MS symptoms being like you had a stroke. When I'm sick and have a fever my entire left side doesn't work. I can't walk or do anything with my left arm. The first time it happened is scared me half to death. 
    now when I start to feel sick, I just brace for my MS to throw its temptantrum....
  • joeysdad
    And yes Jason it does throw a tantrum quite frequently. My wife told me from the very beginning of my diagnosis that I was not going to use ms as an excuse
     so my new motto is "M.S. is not an excuse, however it IS my reality!"