Athetosis in hands
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August 2, 2011 at 8:44 pm
Hi fellow CIDP’ers,
I have had CIDP for several years and it’s been pretty much the same until recently (felt like it was anyway). I’ve developed athetosis (writhing movements) in my hands and was wondering if anyone else with CIDP has experienced this.
My recent Nerve Conduction Test showed that my lower limbs were worse (I was unaware of any worsening though) but my upper limbs were okay (which I thought may have been worse). So I don’t know why I have the movement probs in my hands??I’m a bit confused.
Kazza -
August 3, 2011 at 10:47 am
I guess the first 25 of us to read your post had no answer for you.
My reply is a question. Did a doctor did give you this diagnosis? If yes, please tell more.
I am unable to recall reading, or seeing, this word in any article I’ve ever read that was focused on CIDP.
My ‘stuff’ used to jump around but that is clearly (at least in my opinion) caused by Fasciculations. Fasciculations have their own appearance and cause.
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August 8, 2011 at 11:17 pm
you last two blood work-up tests?
The Complete Metabolic test is the one you want to see – the pain meds we take can deplete calcium amazingly rapidly and over a long term.
This test can help you assess if you are low in calcium+magnesium+vitaminD. The three are needed to be used in combination to asorb the calcium properly. Use Calcium Citrate rather than Calcium Carbonate tho.. it’s more readily taken in by us who have other ‘problems’.
This test will also help you check other factors you mite need such as vitaminB-1 & B-12 which help nerve health and regrowth. Both are very difficult to overdose on tho, as is vitamin C. B-6 tho? Watch carefully, you need some? But too much can do as much damage to the nerve health as it can become toxic in higher than RDA amounts. I’d learned about the B-6 the hard way! Never again!
The calcium doesn’t work ‘overnite’ tho. It will likely take about 6 weeks to really notice a difference, but it can and does help!
Good luck! -
August 10, 2011 at 3:25 am
Thank you for your replies 🙂
Yes, my Doctors have seen my hand movements. I forgot to mention…I also have a resting tremor in my left arm/hand.
So far, my blood tests (calcium, B12 levels, etc,etc) have been okay (touchwood).
Thanks again
Kazza -
August 11, 2011 at 9:46 am
I have had a slight version of this. I only have been dxed since Dec ’10 but this happens to me occasionally. Feels really weird and scary when it happens because you have absolutely no control over it; of course, that is how this whole disease feels! No particular comment from my neuro when I told him about it – maybe par for the course and to him, no big deal! I didn’t even know it had a name!
I’m not giving up the fight and with the good Lords’ help, will get through this and give Him the glory, no matter what! 🙂
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