Thread: Dystonia: Help
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Old 02-21-2012, 07:05 AM   #4
MOMWITHDYSTONIA MOMWITHDYSTONIA is offline
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Join Date: Feb 2012
Location: TOLEDO,OH USA
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Re: Dystonia: Help

My mom was thrown into this dystonia world by a beta blocker called soltalol mixed with her restless legg medicine requip. Dr's claim of course this isnt the case since soltalol isnt on the drug list but with her second pill her life changed forever! Mom went from working full time no major complaints (except for the irregular heart beat they gave her the beta blocker for and he started her off on the lifetime maximum dosage at that!) to now being completely bed ridden and totally dependent on a power wheelchair cant even use the walker any more or the cain. With all my research on the internet im finding she has secondary generalized dystonia (secondary because it isnt genetic it was medication induced, and generalized because it affects her whole entire body. My mom has muscles that twist and turn her in ways i never thought possible not even for the circus people who train themselves thier whole life to bend in weird ways! This has been going on since 09-03-2010 we have seen several dr's they have all either told her i have no idea what is wrong with you or instead of saying i dont know they tell her she is stressed out and that is why her body is doing this...but psych dr told her she isnt stressed to the point that her body would do this to her he said the stress she does have is caused by this condition and he felt it was medication induced...finally we found a local dr on the internet and we started seeing him in sept of 2011 she got her first botox shot for her neck on 12-1-11 she has another scheduled in march. She takes klonopin, zanaflex, and sinemet and alot of each..just had to raise her zanaflex again on thursday the 16th cause she had been in a storm,episode whatever its called since monday the 13th. Her back isnt spasing so much and her hand is almost open, and can almost move her arm but her leg is still lost it will not move when she wants it to but it will twist and turn on its own...go figure! Im terrified at how fast this is progressing and how disabled she has become it breakes my heart to look at her and know just how horrible she feels to be so young and so dependent on me for everything.....i hope your dr heads off your issues quickly before they completely take hold i cant help but to wonder if she would have recieved the proper treatment back in sept 2010 would she be this bad right now? Im here if you wanna vent or ask questions im not sure how big of a family you have but make sure you are surrounded by them as much as possible dont let this get into your head try to stay as positive as possible and keep positive people around you it helps my mom alot..i hold back my emotions as much as i can for her she has enough to deal with.

Amanda