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    Jerking uncomfortable legs

    I’m getting desperate with my legs. No sleep til 4am last night. They twitch and jerk continually as well as feel very odd. I’ve been prescribed increased Gaberpentin but to no avail. I take 1 tablet in the morning and 1at lunchtime then 3 at bedtime. Anyone have similar problems and any solution been found? I think I’ve posted about this before. But it is now so much worse and I’m cracking up with lack of sleep. It even happens during the day.
    Bulbar ALS diagnosed September 2021, no speech, PEG fed, using ipad with Predictable to communicate, taking each day as it comes

    #2
    I don't know if its a coincidence but I also have difficulty at night with sudden leg jerking which wakes me up. No clue as to why this happens. But about 2 weeks ago I started taking magnesium citrate supplements 375mg and it might not be connected but the jerking and occasional cramps is definitely less. It took about a week to notice any improvement. I would like to think its the supplements cos nothing else changed for it to improve. Hope this has a similar effect for u xx

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      #3
      Originally posted by Hakuna View Post
      I’m getting desperate with my legs. No sleep til 4am last night. They twitch and jerk continually as well as feel very odd.
      That sounds like my legs Hakuna I have Restless Legs Syndrome (RLS) and take pramipexole for it every night. If I didn't take meds, my feet, ankles and lower legs jerk every 30 or so seconds, for about 10 seconds, and no way would I sleep. The feeling is so horrible it makes me cry...

      Speak to your GP and if it is RLS, there are meds which stop it dead. xx
      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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        #4
        Stephen had the pramipexol and it did work.
        when i can think of something profound i will update this.

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          #5
          Thank you ladies. I think it is restless legs which i had before the MND but it is much worse now. My husband is going to speak to the MND clinic later so will get him to query whether i can have that.
          Bulbar ALS diagnosed September 2021, no speech, PEG fed, using ipad with Predictable to communicate, taking each day as it comes

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            #6
            Yep….. I had a phase of this when my legs were first wasting along with some pretty sharp cramps in my calves. Fortunately I found that gin and tonic was an excellent remedy at the time 👍👍👍
            Foxes Never Quit 💙

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              #7
              I wish I could drink that. Used to be my favourite. I could put it down my PEG but not the same.
              Bulbar ALS diagnosed September 2021, no speech, PEG fed, using ipad with Predictable to communicate, taking each day as it comes

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                #8
                Hakuna There is a related condition called Periodic Limb Movement Disorder (PLMD), which is longer to type so I didn't bother late last night as I was tired 😏

                Anyhoo, I have that too - it isn't unusual to have both RLS & PLMD - and my meds stop all the jerks.

                ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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                  #9
                  Originally posted by Ellie View Post
                  Hakuna - and my meds stop all the jerks.
                  Nope….not quite…..I’m still here 🤣🤣🤣😘😘😘
                  Foxes Never Quit 💙

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                    #10
                    Very funny 🤣
                    when i can think of something profound i will update this.

                    Comment


                      #11
                      Lcfcno1fan Nice one James 🤣😘
                      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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                        #12
                        Result my GP is going to do a prescription for pramipexole which I should get tomorrow. Only one more sleepless night hopefully.
                        Bulbar ALS diagnosed September 2021, no speech, PEG fed, using ipad with Predictable to communicate, taking each day as it comes

                        Comment


                          #13
                          Originally posted by Hakuna View Post
                          Result my GP is going to do a prescription for pramipexole which I should get tomorrow. Only one more sleepless night hopefully.
                          Fingers crossed for you Hakuna

                          As an fyi, I started on 0.088mg but had to move to the next dose, 0.18mg. xx
                          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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                            #14
                            Apparently I’m getting tablets which we’ve got to crush and put in water to go down my PEG so I don’t know how strong they’ll be. Hopefully those plus the Gaberpentin will work. My legs have started jerking already tonight so not hopeful they will calm down.
                            Bulbar ALS diagnosed September 2021, no speech, PEG fed, using ipad with Predictable to communicate, taking each day as it comes

                            Comment


                              #15
                              I crush mine, not a problem.

                              In the evening, try planting your foot/feet firmly on the floor; push your foot up towards your leg invoking clonus, this can calm the jerks. Clonus is when your ankle beats rhythmically. xx
                              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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