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Re: [Adults AMC] Any experiences with twitching legs?

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  • becky deaver
    Fran Thanks very much.  Apparently your toy soldier is my wooden doll :)  Funny to have it described in male and female terms.  First time I remember being
    Message 1 of 18 , Aug 25, 2010
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      Fran
      Thanks very much.  Apparently your toy soldier is my wooden doll :)  Funny to have it described in male and female terms.  First time I remember being checked by a Dr. specialist was in 1971 and he was surprised that I could do what I do considering the extent of my flexing limitations.  My elbows for example don't straighten nor do they bend very much.  My Mom was told (in 1953) to exercise my arms and legs, bending them, etc..  That Dr. told me that by doing that while I was an infant helped me with mobility as an adult.
      Thanks again for the info.
      Becky

      --- On Tue, 8/24/10, Frances A. Wang <frances.faw@...> wrote:

      From: Frances A. Wang <frances.faw@...>
      Subject: Re: [Adults AMC] Any experiences with twitching legs?
      To: amc_adults@yahoogroups.com
      Date: Tuesday, August 24, 2010, 4:36 AM







       









      When we learned about AMC we learned there were two types.

      It was 26 years ago so I won't try to give names. My son has the Arthrogryposis Congenita Amoyplasia variety.

      I remember that there is a hereditary type which we were ruled out for having.

      The toy soldier is the typical presentation for patients. My son was born with an atypical presentation which

      has allowed him fortunately to do all self care and to avoid surgery on tendons to try for more use in an arm.

      There is a famous picture of a boy hunting with a gun over his shoulder in the 1800's. He has the toy soldier arms with in-turned

      wrists. My son has one hand that is more flexed than the other and one he can open almost all the way. He has no

      neurological deficits and has always amazed his doctors with his fine motor abilities. I think there is a wide continuum

      of AMC presentations. If I find anything that answers your question more specifically I will send a link.



      Fran



      On Aug 22, 2010, at 6:32 PM, becky deaver wrote:



      > Fran

      > Thanks for the information about the Alfred I. duPont Hospital for Children. Do you - or anyone - know the answer to this .... I was told there are two types of AMC 1 where as an infant you appear as a wooden doll and the other you appear as a rag doll. Pretty descriptive I thought at the time and realized I'm the wooden doll type with my arms looking like they won't bend at all. Does anyone know if this is true?

      > thanks,

      > Becky

      >

      > --- On Sun, 8/22/10, Frances A. Wang <frances.faw@...> wrote:

      >



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      [Non-text portions of this message have been removed]
    • daizyrina
      Well, I ve finally been at my GP s and have had blood tests done. It turns out that there s nothing there to explain the twitching legs. My doctor is pretty
      Message 2 of 18 , Oct 1, 2010
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        Well, I've finally been at my GP's and have had blood tests done.
        It turns out that there's nothing there to explain the twitching legs. My doctor is pretty sure that it's RLS (Restles leg syndrom) and treatment would be medicine that is given over a period of at least two years. It's pretty strong medicin and can have some serious side effects so I'm not entirely sure that I'm going to take the medical treatment - at least not yet - especially since we're working on becoming a family. Pregnantcy and medications don't go well together so..
        But she also reffered me to and orthpeadic surgeon to have my knees examined since they tend to dislocated. In addition she's asked the orthpeadic surgeon to give an oppinion on why my legs twitch and to make sure that the uncontrollabe movements don't hurt/damage my knees and my hip any more than they already are.

        Just thought I'd give you guys an update.
        Still need to see the orthpeadic surgeon if any news comes up there I'll let you know. But as I originally thought RLS-medications apparently are the way to go.

        Have a great weekend

        Helle Karina

        --- In amc_adults@yahoogroups.com, "daizyrina" <hellekarina@...> wrote:
        >
        > Hi All,
        >
        > As I've told you before I'm a 38 y.o. Dane recently diagnozed with AMC. I'm not one of those with the biggest problems but since almost all of my joints are affected I have a lot of issues that tend to get worse the older I get. But new things are rare to me and I find it hard to find out if it is connected to the AMC or not.
        >
        > Here's my problem.
        > In the last year or so my legs have started to twitch and since I've had a hip replacement - which isn't perfect - it hurts a lot when the twitching is bad. I stretch as good as I can (not having full mobility in my ancles makes it quite hard) and use icebags to try to clam the legs but still it gets worse when it's time to relax and go to bed. It's always at this time of day it's a problem. Personally I'm begining to suspect that it might be RLS (Restless leg syndrome) but so far my doctor and physio therapist both just say "well we don't know much about AMC so it's probably because of that. It's something you'll have to live with".
        > But since it's really really disturbing for my sleep I'm not satisfied with that idea.
        > So I'm wondering, do any of you have problems with twitching legs?
        > Do you know if it's a normal thing for AMC or should I maintain the assertion that it's not connected?
        >
        > Helle-Karina
        >
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