Parkinson's Disease Tulip

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Old 02-01-2009, 11:23 AM #1
Ibken Ibken is offline
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Ibken Ibken is offline
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Default Dyskinesia - ie Chorea type ankle writhing

Has anyone with this prob found relief by switching from Sinemet or mucuna to Stalevo?
I think maybe Harley did - after her CClinic experience.
It feels like a severly sprained ankle gone spastic. Very painful and disabling. It happens with the oning of meds and then again as it wears off. Eating generally brings it on...and I have to limp/writhe off to lie down - which might lessen the severity...or not.
I read that only Amantadine helps....and as I did not like the side effects, I really don't want to take this. Any other choices?
My sore swollen ankle appreciiates any suggestions. Thanks, Ibby
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Old 02-01-2009, 01:11 PM #2
Fiona Fiona is offline
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Hi Ibby - merry Sunday, etc.

My ankle/toes do this as well and I am on Amantadine - altho it might be worse without. One of my big drawbacks with mucuna was that it started to make this particular symptom REALLY bad at one point....since I take Stalevo and Sinemet, not sure how to advise...BUT I do find that taking time to lie down or even just sit and breathe, and consciously use each breath to still the spasm in my ankle/foot, (breathe in, breathe out and relax-calm-drop, quiet....think heavy foot, peace, the color green, whatever....)has been starting to work pretty well, and I really am able to stop it with some attention and work that way. It makes me feel that I'm doing something that is acumulating in terms of getting dominion over my body again. Or better, entering into peaceful negotiation and understanding...
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Ibken (02-02-2009)
Old 02-01-2009, 01:24 PM #3
lindylanka lindylanka is offline
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Hi Ibby,
I had something very similar to what you describe for about 6 months last year. Neuro advised CR overnight (had funny dreams and no relief), GP prescribed quinine (totally useless), and I did not get any help till I saw my pd nurse specialist, who listened carefully to the timing of it (early morning very bad, could hardly walk , wearing off times, and occasionally at night) and reckoned it was from being under medicated. She prescribed entacapone, I worked out a new meds regime that included it, and have not had the problem since. She did however say that it could also happen from being over medicated, and that if that had been the case she would have tried slightly less sinemet. You are getting it after eating too - perhaps that is the key to whether you are over or undermedicated. She described it as a medication related dystonia. Hope this helps.

Lindy
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