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.
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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 xxDiagnosed June 2022. Confirmed MND. Limb onset. Symptoms started November 2020.
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Originally posted by Hakuna View PostI’m getting desperate with my legs. No sleep til 4am last night. They twitch and jerk continually as well as feel very odd.
Speak to your GP and if it is RLS, there are meds which stop it dead. xxDiagnosed 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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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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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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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
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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. xxDiagnosed 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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