My wife D is now into her third year of MND diagnosis. She is now fully quadriplegic and has been incapable of voluntarily moving her limbs. Lately i have noticed she has significant tremors in both upper arms and lower limbs. Has anyone experience of this with themselves or who they care for ?
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Hi Steve,
Sorry to hear of D's limb tremors and hope she isn't distressed by them.
One thing in particular springs to mind:
If the tremors mainly happen towards the latter part of the day and, in particular, in bed, it sounds like PLMD (periodic limb movement disorder) which happens due to neuronal damage and can surface at any stage of MND, but is more common in late stage MND. It's like having RLS (restless leg syndrome) in all 4 limbs.
I have it in my legs - my lower legs and feet make involuntary movements and shake in a way which I cannot do voluntarily - and I take pramipexole which, at the right dose, stops it completely. There are other meds used to treat it, eg, gabapentin and clonazepam.
Is D taking any antispasmodic medication? They may be spasms.
Is D dehydrated?
Do talk to her nurse too and hopefully a solution can be found.
Steve, I read your post on Devonmaid's thread and the love and tenderness with which it was written really touched me, it's obvious how much D means to you - I am sorry you're in this situation.
Take care.
Love Ellie.Diagnosed 2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user.
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Hi Ellie,
thanks for your reply. Sorry for a late response. Been ill myself after my latest re-occurring cancer inspection, all clear! but had infection afterwards. Back up and fighting again!. Your comments about D,s complaint are interesting in a retrospective way as D had restless leg syndrome before diagnosis of MND. With onset of MND D could not stand any of her feet touching her mattress and liked to have cold compress pads on her feet to sleep. Now that has all flipped and she rarely want the pads on and does not complain about foot contact on bedding.
In regards hydration fluids are fine ( in line with MND clinic dietician recommendations and monitored on fluid balance chart) and previous spasms have gone, anti spasmodic medication in place because these came early and spasms have almost disappeared. Thanks for the recommendations on medication for the tremors which work for you, I will ask the question at D,s next MND clinic visit in December.
Thank you for your valuable input Elle, regards SteveComment
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