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Any experiences with twitching legs?

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  • daizyrina
    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
    Message 1 of 18 , Aug 20, 2010
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      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
    • Patty Clarke
      Hi there, well that is too weird. After my hip replacement two years ago I started getting what my physio just said was spasms in my lower leg, ankle and
      Message 2 of 18 , Aug 20, 2010
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        Hi there, well that is too weird. After my hip replacement two years ago I
        started getting what my physio just said was spasms in my lower leg, ankle
        and foot, Only happens once I am in bed after awhile. Then it will start
        twitching, spasming, sometimes just short ones other times it is really
        intense like my foot is going to fly off because it whips from side to
        side!! However it does not keep me awake, I do fall asleep and upon
        wakening it does not happen.



        I asked my doctor why this is happening, every night for a period of time
        until I fall asleep and he said he does not know but says it has nothing to
        do with the hip replacement!! Well I have a hard time believing that, why
        did it only start after all my life after the surgery. Especially AMCèrs do
        not usually get muscle spasms because we have so little or very little
        muscle ability!! We don’t even have normal or many times absent reflexes so
        we cannot even make a spasm happen!!



        I have no offers of solution for you because it is not bothersome for me it
        is just too weird and annoying…….if it lasts long then sometimes hard to
        fall asleep.`



        Patty.



        From: amc_adults@yahoogroups.com [mailto:amc_adults@yahoogroups.com] On
        Behalf Of daizyrina
        Sent: August-20-10 9:18 AM
        To: amc_adults@yahoogroups.com
        Subject: [Adults AMC] Any experiences with twitching legs?





        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





        [Non-text portions of this message have been removed]
      • Neal Goldsmith
        hi: After reading about what u have in ur legs, i decided to tell u that i get charlies horses in the backs of my legs. I do what so i do have a little muscle
        Message 3 of 18 , Aug 20, 2010
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          hi: After reading about what u have in ur legs, i decided to tell u that i get
          charlies horses in the backs of my legs. I do what so i do have a little muscle
          in the backs of my legs. I have had no hip replacements tho so i don't know what
          is causing this. the only thing that  relieves it is standing up for a few
          minutes. If i don't it just keeps on getting worse. I can go to sleep after
          this. I wonder what is causing this also. Neal


           



          ________________________________
          From: Patty Clarke <pelclarke@...>
          To: amc_adults@yahoogroups.com
          Sent: Fri, August 20, 2010 6:47:49 PM
          Subject: RE: [Adults AMC] Any experiences with twitching legs?

           
          Hi there, well that is too weird. After my hip replacement two years ago I
          started getting what my physio just said was spasms in my lower leg, ankle
          and foot, Only happens once I am in bed after awhile. Then it will start
          twitching, spasming, sometimes just short ones other times it is really
          intense like my foot is going to fly off because it whips from side to
          side!! However it does not keep me awake, I do fall asleep and upon
          wakening it does not happen.

          I asked my doctor why this is happening, every night for a period of time
          until I fall asleep and he said he does not know but says it has nothing to
          do with the hip replacement!! Well I have a hard time believing that, why
          did it only start after all my life after the surgery. Especially AMCèrs do
          not usually get muscle spasms because we have so little or very little
          muscle ability!! We don’t even have normal or many times absent reflexes so
          we cannot even make a spasm happen!!

          I have no offers of solution for you because it is not bothersome for me it
          is just too weird and annoying…….if it lasts long then sometimes hard to
          fall asleep.`

          Patty.

          From: amc_adults@yahoogroups.com [mailto:amc_adults@yahoogroups.com] On
          Behalf Of daizyrina
          Sent: August-20-10 9:18 AM
          To: amc_adults@yahoogroups.com
          Subject: [Adults AMC] Any experiences with twitching legs?

          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

          [Non-text portions of this message have been removed]






          [Non-text portions of this message have been removed]
        • morne vanWyk
          Hi all,   I think that it is a great thing that you guys brought up the twitching of muscles. I wondered whether I was the only AMC er who experience this
          Message 4 of 18 , Aug 21, 2010
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            Hi all,
             
            I think that it is a great thing that you guys brought up the twitching of muscles. I wondered whether I was the only AMC'er who experience this phenomenon. My experience is that I have a left arm that is twitching at times. And yes I agree w/ Patty that we have absent reflexes it is odd that we even have spasms in some limbs.... Is it perhaps possible that we could get a medical expert specializing in AMC, to explain to us what's going on..... I'm only suggesting
             
            Morne

            --- On Sat, 8/21/10, Patty Clarke <pelclarke@...> wrote:


            From: Patty Clarke <pelclarke@...>
            Subject: RE: [Adults AMC] Any experiences with twitching legs?
            To: amc_adults@yahoogroups.com
            Date: Saturday, August 21, 2010, 3:47 AM


             



            Hi there, well that is too weird. After my hip replacement two years ago I
            started getting what my physio just said was spasms in my lower leg, ankle
            and foot, Only happens once I am in bed after awhile. Then it will start
            twitching, spasming, sometimes just short ones other times it is really
            intense like my foot is going to fly off because it whips from side to
            side!! However it does not keep me awake, I do fall asleep and upon
            wakening it does not happen.

            I asked my doctor why this is happening, every night for a period of time
            until I fall asleep and he said he does not know but says it has nothing to
            do with the hip replacement!! Well I have a hard time believing that, why
            did it only start after all my life after the surgery. Especially AMCèrs do
            not usually get muscle spasms because we have so little or very little
            muscle ability!! We don’t even have normal or many times absent reflexes so
            we cannot even make a spasm happen!!

            I have no offers of solution for you because it is not bothersome for me it
            is just too weird and annoying…….if it lasts long then sometimes hard to
            fall asleep.`

            Patty.

            From: amc_adults@yahoogroups.com [mailto:amc_adults@yahoogroups.com] On
            Behalf Of daizyrina
            Sent: August-20-10 9:18 AM
            To: amc_adults@yahoogroups.com
            Subject: [Adults AMC] Any experiences with twitching legs?

            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

            [Non-text portions of this message have been removed]











            [Non-text portions of this message have been removed]
          • becky deaver
            I haven t had that problem - but then again I ve had no hip replacement either.  If you think it may be RLS then tell your DR you WANT to try whatever the
            Message 5 of 18 , Aug 21, 2010
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              I haven't had that problem - but then again I've had no hip replacement either.  If you think it may be RLS then tell your DR you WANT to try whatever the treatment for that is.  After all it is your body!  If you find there are others with hip replacements that also have this, I'd tell the DR about that too. 
              Your DRs replies about them not being connected reminds me of dentists who tell people that there is no relationship between having wisdom teeth removed and getting bells palsy afterwards.  Baloney!
              Good luck!
              Becky

              --- On Fri, 8/20/10, Patty Clarke <pelclarke@...> wrote:

              From: Patty Clarke <pelclarke@...>
              Subject: RE: [Adults AMC] Any experiences with twitching legs?
              To: amc_adults@yahoogroups.com
              Date: Friday, August 20, 2010, 8:47 PM







               









              Hi there, well that is too weird. After my hip replacement two years ago I

              started getting what my physio just said was spasms in my lower leg, ankle

              and foot, Only happens once I am in bed after awhile. Then it will start

              twitching, spasming, sometimes just short ones other times it is really

              intense like my foot is going to fly off because it whips from side to

              side!! However it does not keep me awake, I do fall asleep and upon

              wakening it does not happen.



              I asked my doctor why this is happening, every night for a period of time

              until I fall asleep and he said he does not know but says it has nothing to

              do with the hip replacement!! Well I have a hard time believing that, why

              did it only start after all my life after the surgery. Especially AMCèrs do

              not usually get muscle spasms because we have so little or very little

              muscle ability!! We don’t even have normal or many times absent reflexes so

              we cannot even make a spasm happen!!



              I have no offers of solution for you because it is not bothersome for me it

              is just too weird and annoying…….if it lasts long then sometimes hard to

              fall asleep.`



              Patty.



              From: amc_adults@yahoogroups.com [mailto:amc_adults@yahoogroups.com] On

              Behalf Of daizyrina

              Sent: August-20-10 9:18 AM

              To: amc_adults@yahoogroups.com

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



              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



              [Non-text portions of this message have been removed]

























              [Non-text portions of this message have been removed]
            • Helle Karina
              Hi Everyone It s all new to me that you all mention that AMC-patients aren t suppopsed to have normal muscle mass and absent reflexes. But then again in
              Message 6 of 18 , Aug 22, 2010
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                Hi Everyone

                It's all new to me that you all mention that AMC-patients aren't suppopsed to have normal muscle mass and absent reflexes. But then again in Denmark we have no experts on AMC. In fact the doctors have to send blod test to Germany just to diagnose. So it doesn't surprise me that there are a lot of things about AMC that I don't know.
                I don't think, though, that I'm lacking muscles as such - that's not the way I'm affected. I have limited mobility of almost every joint in my body so tend to have normal reflexes (as much as is possible within my range of mobility).

                I haven't had much success with just getting out of bed, standing and moving. It takes me hours to get my legs to calm down again and it only happens if I stretch my calves and use ice bags for as long as I can stand it. It has really started to affect my sleep in a big way so I'm begining to get a bit frustraited. One can only stand a lack of sleep for so long.. So I'm thinking that I'll ask my doctor if medication for RLS could possibly help or if anything else could possibly help. I'll let you know how that goes.
                My physio therapist can't help me with the twitching but is the one who reccomended stretching and ice bags - which so far is the only thing that helps a bit. But wouldn't it be nice if there was something one could do prophylacticly!

                Anyway, thank you all for your responses. Having other AMC'rs to ask about these things is so good for me since there's noone in Denmark I can go to for these things.

                Have a great Sunday

                Helle-Karina

                [Non-text portions of this message have been removed]
              • shelovetosail
                I am 54.. (AMC all four limbs) Four years ago I had a bout with Restless Leg Syndrome which lasted over a year. Dr. gave me Neurontin, it helped but I
                Message 7 of 18 , Aug 22, 2010
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                  I am 54.. (AMC all four limbs)
                  Four years ago I had a bout with Restless Leg Syndrome which lasted over a year. Dr. gave me Neurontin, it helped but I preferred the discomfort to the side effects of the medicine, so I quit taking it after 2 weeks. Used meditation/guided imagery and it worked quite well. Recently I have noticed pretty severe tingling in my legs from the knees to the toes. It keeps me from falling asleep unless I meditate. Also have it when I sit down and put my legs up during the day. Have to make an appt. with the Dr as it's been going on now for a few months and need to get it seen to.

                  "Keep the faith, spread the love and share the happiness."
                  Kathleen McCoy Grover
                  Lincoln, CA
                • Helle Karina
                  Hi, I still very much doubt that my legs twitch due to the hips replacment. It seems odd to me that it would start app. eight year after the replacement - so I
                  Message 8 of 18 , Aug 22, 2010
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                    Hi,
                    I still very much doubt that my legs twitch due to the hips replacment. It seems odd to me that it would start app. eight year after the replacement - so I don't see the connection there.

                    I can't connect my twitching to anything in particular. I can't say that it will come if I've been walking a lot (as much I can...), can't say that it will come if I've been sitting down a lot, it's not related to when we have sex or when I clean the house.
                    But I'm wondering if it might not have to do with limited mobility in my hips, knees and ankles. Due to that I can't really stretch all of the muscles and perhaps that's what's doing it. But in that case physio therapy ought to help. It's quite a mistry. But as I wrote I'll try my Doctor again and hope that she doesn't just say "live with it".

                    Helle-Karina

                    [Non-text portions of this message have been removed]
                  • Frances A. Wang
                    My son has AMC. He does not have cramps or twitching. Yet. I had to go to a medical school library to learn about AMC after he was born in 1983. The doctors
                    Message 9 of 18 , Aug 22, 2010
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                      My son has AMC. He does not have cramps or twitching. Yet.
                      I had to go to a medical school library to learn about AMC after he was born in 1983.
                      The doctors at the Shriners hospital gave us basic information but not enough.
                      Now there are so many helpful sites on the WWWeb. The muscle mass as well as
                      joints, ligaments, tendons are all different in AMC patients. There are fatty cells within the
                      muscle so the masses can't bulk up normally with exercise and explains weakness and the soft
                      undefined shape of affected limbs.

                      Have any of the doctors or therapists told you to check calcium levels? Low calcium
                      can result in muscle cramping. Warm baths or hydro therapy, soaks in a warm tub could also
                      relax muscles prior to bed. I will watch to see if the Restless Leg syndrome meds help.

                      The Alfred I. duPont Hospital for Children is famous world wide for its research and
                      treatment of Arthrogryposis. They can be contacted and will answer questions. People come
                      from all over the world for their treatments, clinics and to participate in research.
                      There was a woman doctor on the West Coast, Seattle I think, when my son was young who
                      also has published widely results of her work. As AMC patients age they are left pretty much
                      on their own to find good medical and therapeutic care. On the duPont site, Rennie is the physio
                      therapist who treated my son. She could answer questions about cramping and twitching, also.

                      My son has atypical AMC, ie, he has flexion contractions on the left in the arm and leg, ankle, and
                      extension contraction on the right. He uses a manual wheelchair to get around, drives a car and
                      is in grad school. He watches his weight, exercises and walks with braces on a treadmill for weight
                      bearing and aerobic exercise. I was a nurse working for a Rheumatologist in an office setting when
                      pregnant with my son. I has a viral illness in my first trimester to which they attribute his AMC. He did
                      not move in utero until after five months. Overall, he is doing well but has to bear weight, exercise and be
                      very careful of nutrition.

                      I am following this thread closely.

                      Fran in Maryland, USA
                    • Frances A. Wang
                      Was any damage done to the sciatic nerve during the hip replacement? Lying down might be stretching your body in such a way that it starts to act up.
                      Message 10 of 18 , Aug 22, 2010
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                        Was any damage done to the sciatic nerve during the hip replacement? Lying down might be stretching
                        your body in such a way that it starts to act up. Pressure from the mattress might be a trigger. If you lay down flat on the floor for
                        short periods of time, say 10-15 min to let the body gradually stretch maybe when you go to bed and are flat for longer times the twitching or cramping might
                        gradually lessen. We used this technique with our patients with arthritis and other autoimmune diseases. I was working in the eighties so
                        there might be more sophisticated approaches today. My son sleeps on a firm mattress but I've wondered about those foam mattress. Does anyone have
                        an experience with the conforming foam mattress? My son can roll easily on a hard surface but wonders about the foam. They might reduce pressure points
                        and support the body's conformation. I don't know.

                        I know people have different ideas about chiropractors but has anyone consulted one?
                        Does anyone use a phasiatrist (spelling doubtful) who is a doctor specialist in physical therapy medicine to evaluate
                        you and write specific orders for your physical therapy at home for your guidance and with a therapist?
                        My son had one for years while we were do aggressive work. We have a local fella
                        he sees now when he has a tight neck or weird pain. These guys see lots of sports injuries, too. Just an idea.

                        Fran
                      • Frances A. Wang
                        Neurontin is GABA. Check out a local high end supplement store. Sometimes neuropathies can be helped by taking Borage Oil. Look into this for tingling. A
                        Message 11 of 18 , Aug 22, 2010
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                          Neurontin is GABA. Check out a local high end supplement store.
                          Sometimes neuropathies can be helped by taking Borage Oil. Look into this for tingling.
                          A friend had peripheral neuropathy so bad he can't put a sheet on his feet. Being a
                          scientist he checked out sites saying they get relief from Borage Oil. He gave it a try and it works for him.

                          Do any of you use glucosamine? My son gets relief from it.

                          I am just throwing out info I've learned about for consideration, not making recommendations.

                          Very interesting to hear about meditation. I find it very helpful in many ways for my life, too.

                          Fran in Maryland

                          On Aug 22, 2010, at 9:44 AM, shelovetosail wrote:

                          > I am 54.. (AMC all four limbs)
                          > Four years ago I had a bout with Restless Leg Syndrome which lasted over a year. Dr. gave me Neurontin, it helped but I preferred the discomfort to the side effects of the medicine, so I quit taking it after 2 weeks. Used meditation/guided imagery and it worked quite well. Recently I have noticed pretty severe tingling in my legs from the knees to the toes. It keeps me from falling asleep unless I meditate. Also have it when I sit down and put my legs up during the day. Have to make an appt. with the Dr as it's been going on now for a few months and need to get it seen to.
                          >
                          > "Keep the faith, spread the love and share the happiness."
                          > Kathleen McCoy Grover
                          > Lincoln, CA
                          >
                          >



                          [Non-text portions of this message have been removed]
                        • becky deaver
                          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
                          Message 12 of 18 , Aug 22, 2010
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                            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:

                            From: Frances A. Wang <frances.faw@...>
                            Subject: RE: [Adults AMC] Any experiences with twitching legs?
                            To: amc_adults@yahoogroups.com
                            Date: Sunday, August 22, 2010, 1:10 PM







                             









                            My son has AMC. He does not have cramps or twitching. Yet.

                            I had to go to a medical school library to learn about AMC after he was born in 1983.

                            The doctors at the Shriners hospital gave us basic information but not enough.

                            Now there are so many helpful sites on the WWWeb. The muscle mass as well as

                            joints, ligaments, tendons are all different in AMC patients. There are fatty cells within the

                            muscle so the masses can't bulk up normally with exercise and explains weakness and the soft

                            undefined shape of affected limbs.



                            Have any of the doctors or therapists told you to check calcium levels? Low calcium

                            can result in muscle cramping. Warm baths or hydro therapy, soaks in a warm tub could also

                            relax muscles prior to bed. I will watch to see if the Restless Leg syndrome meds help.



                            The Alfred I. duPont Hospital for Children is famous world wide for its research and

                            treatment of Arthrogryposis. They can be contacted and will answer questions. People come

                            from all over the world for their treatments, clinics and to participate in research.

                            There was a woman doctor on the West Coast, Seattle I think, when my son was young who

                            also has published widely results of her work. As AMC patients age they are left pretty much

                            on their own to find good medical and therapeutic care. On the duPont site, Rennie is the physio

                            therapist who treated my son. She could answer questions about cramping and twitching, also.



                            My son has atypical AMC, ie, he has flexion contractions on the left in the arm and leg, ankle, and

                            extension contraction on the right. He uses a manual wheelchair to get around, drives a car and

                            is in grad school. He watches his weight, exercises and walks with braces on a treadmill for weight

                            bearing and aerobic exercise. I was a nurse working for a Rheumatologist in an office setting when

                            pregnant with my son. I has a viral illness in my first trimester to which they attribute his AMC. He did

                            not move in utero until after five months. Overall, he is doing well but has to bear weight, exercise and be

                            very careful of nutrition.



                            I am following this thread closely.



                            Fran in Maryland, USA























                            [Non-text portions of this message have been removed]
                          • Patty Clarke
                            Wow this is such helpful information Fran!! Thank you, I need to re-read and absorb and follow up on some of your suggestions.I love this support group! Patty.
                            Message 13 of 18 , Aug 22, 2010
                            • 0 Attachment
                              Wow this is such helpful information Fran!! Thank you, I need to re-read and
                              absorb and follow up on some of your suggestions.I love this support group!



                              Patty.



                              From: amc_adults@yahoogroups.com [mailto:amc_adults@yahoogroups.com] On
                              Behalf Of Frances A. Wang
                              Sent: August-22-10 10:11 AM
                              To: amc_adults@yahoogroups.com
                              Subject: RE: [Adults AMC] Any experiences with twitching legs?





                              My son has AMC. He does not have cramps or twitching. Yet.
                              I had to go to a medical school library to learn about AMC after he was born
                              in 1983.
                              The doctors at the Shriners hospital gave us basic information but not
                              enough.
                              Now there are so many helpful sites on the WWWeb. The muscle mass as well as

                              joints, ligaments, tendons are all different in AMC patients. There are
                              fatty cells within the
                              muscle so the masses can't bulk up normally with exercise and explains
                              weakness and the soft
                              undefined shape of affected limbs.

                              Have any of the doctors or therapists told you to check calcium levels? Low
                              calcium
                              can result in muscle cramping. Warm baths or hydro therapy, soaks in a warm
                              tub could also
                              relax muscles prior to bed. I will watch to see if the Restless Leg syndrome
                              meds help.

                              The Alfred I. duPont Hospital for Children is famous world wide for its
                              research and
                              treatment of Arthrogryposis. They can be contacted and will answer
                              questions. People come
                              from all over the world for their treatments, clinics and to participate in
                              research.
                              There was a woman doctor on the West Coast, Seattle I think, when my son was
                              young who
                              also has published widely results of her work. As AMC patients age they are
                              left pretty much
                              on their own to find good medical and therapeutic care. On the duPont site,
                              Rennie is the physio
                              therapist who treated my son. She could answer questions about cramping and
                              twitching, also.

                              My son has atypical AMC, ie, he has flexion contractions on the left in the
                              arm and leg, ankle, and
                              extension contraction on the right. He uses a manual wheelchair to get
                              around, drives a car and
                              is in grad school. He watches his weight, exercises and walks with braces on
                              a treadmill for weight
                              bearing and aerobic exercise. I was a nurse working for a Rheumatologist in
                              an office setting when
                              pregnant with my son. I has a viral illness in my first trimester to which
                              they attribute his AMC. He did
                              not move in utero until after five months. Overall, he is doing well but has
                              to bear weight, exercise and be
                              very careful of nutrition.

                              I am following this thread closely.

                              Fran in Maryland, USA





                              [Non-text portions of this message have been removed]
                            • Helle Karina
                              Frances, some of your advice was helpful even for someone living in Denmark. Unfortunately we have very very strict rules about medicine in Denmark - even
                              Message 14 of 18 , Aug 23, 2010
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                                Frances,
                                some of your advice was helpful even for someone living in Denmark. Unfortunately we have very very strict rules about medicine in Denmark - even natural remedies are under strict supervision in Denmark and there are a lot of things you can't buy. E.g. it's only within the last 5 years that you've been able to buy glucosamine in Denmark. When I tried it at first it helped me quite a bit with the "morning stiffness" and swelling but it turned out my allergies went crazy because glucosamine is made from shrimps.

                                I'm not sure we can get the oil here in Denmark but I'll look into it.
                                I'll be sure to let you know if my doctor will prescripe RLS-medications for me - hopefully it'll have the same name in the US as it has in Denmark (but it isn't often that happens) - and how it works. I'll have to look into the side effects before taking it though, and make sure that it doesn't cause any problems with my other meds.

                                I haven't got much experience with conforming foam mattress' but I have a pillow made of conforming foam and it's helped me quite a bit. My arms do now swell as much, they don't sleep as much and fcor some reason they're not "pushed" forward as much as they are if I use a regular pillow.
                                I can't imagine that turning over on a foam mattress would be a problem. If it is there are special sheets that can help you. I use one now and it's great for me.
                                I don't know what it's called in English but translated directly from Danish to English it would be called a "turning sheet". I know they use it a lot in hospitals and nursing homes to help turn people over but you can use it yourself too. It's not a full lenght sheet but is to be placed on the bed so i runs from you knees to your neck. I guess one can make it yourself since it's just cotton linen and in the middle there's a big piece of sateen woven "slippery" fabric sowed onto it. It is so big that you can fold the ends underneath the top mattress. I'm sure you'll be able to find out what it's called in the USA and who to get a hold of one.
                                I know that some stores in Denmark have beds that you can borrow and try out for comfort of a couple of days so that might be a way to try out the foam mattress and see if it's bettering the situation. In Denmark you can also go to the municipalties aids depot and try out things - maybe you have that option too.
                                I would apply for one tomorrow via the municipalty but I've already exceeded my limit for the aids I can get this year. Unfortunately beds with conforming foam mattresses are very very expencive in Denmark so there's not much of a chance of me affording one myself - Looking at it the price is as much as 3 months rent and rents are ridiculously high in Denmark we use about 3/4 of our income on rent.

                                Anyway, back on track.
                                You advice about laying down on the floor is quite helpful unfortunately I can't do that as I also have what's called Scheuerman's disease in my back which makes it very curved. Since it's a malformed vertabra I can't stretch my back enought to lie on the floor. I'm not sure that my twitching is connected to my hip replacement cause it doesn't matter if I'm on my back, my side or on my stomach when in bed and heat seems to make it worse. I haven't noticed if warm water therapy make it better but I'll try to remember noticing it when I (hopefully) will be approved for water therapy again in the fall.
                                Thanks for all your great ideas some of them will have to be tried out if I it's poosible for me here on the other side of the world.

                                Helle-Karina




                                [Non-text portions of this message have been removed]
                              • Frances A. Wang
                                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
                                Message 15 of 18 , Aug 24, 2010
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                                  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:
                                  >



                                  [Non-text portions of this message have been removed]
                                • Frances A. Wang
                                  Dear Helle, Thank you for the idea of the turning sheet. I know we used folded sheets in hospital to facilitate turning but had never heard of one for
                                  Message 16 of 18 , Aug 24, 2010
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                                    Dear Helle,

                                    Thank you for the idea of the turning sheet. I know we used folded sheets in hospital to facilitate turning but had never
                                    heard of one for personal use with the slick material in it. Makes good sense.

                                    My son has insurance thru his father's work and will be able to stay on it until he has a job that gets him his own insurance coverage.
                                    I wish we had more support as over the years even with insurance we have often had to pay out of pocket for special items that are
                                    not covered by said policy. It is very interesting to read about your country's system.

                                    Do check on Borage before using it. It is plant based. My daughter has many allergies to plants so also has to be careful before
                                    using supplements.

                                    With a curve in your spine lying flat is out of the question. I am even more curious now about the foam mattress. They are costly here, too,
                                    and I don't think a customer can use and return if they don't like it here. I will keep my ears open if a friend gets one so we can try one out for
                                    my son. Thank you for the input on the pillow. He has torticollis in his neck and uses a soft pillow that he can conform to suit himself. Maybe a
                                    foam one would help. We are always open to trying things.

                                    Again, thank you all for the great feedback. It is very welcomed and most helpful.

                                    Frances

                                    On Aug 23, 2010, at 7:10 AM, Helle Karina wrote:

                                    > Frances,
                                    > some of your advice was helpful even for someone living in Denmark. Unfortunately we have very very strict rules about medicine in Denmark - even natural remedies are under strict supervision in Denmark and there are a lot of things you can't buy. E.g. it's only within the last 5 years that you've been able to buy glucosamine in Denmark. When I tried it at first it helped me quite a bit with the "morning stiffness" and swelling but it turned out my allergies went crazy because glucosamine is made from shrimps.
                                    >
                                    > I'm not sure we can get the oil here in Denmark but I'll look into it.
                                    > I'll be sure to let you know if my doctor will prescripe RLS-medications for me - hopefully it'll have the same name in the US as it has in Denmark (but it isn't often that happens) - and how it works. I'll have to look into the side effects before taking it though, and make sure that it doesn't cause any problems with my other meds.
                                    >
                                    > I haven't got much experience with conforming foam mattress' but I have a pillow made of conforming foam and it's helped me quite a bit. My arms do now swell as much, they don't sleep as much and fcor some reason they're not "pushed" forward as much as they are if I use a regular pillow.
                                    > I can't imagine that turning over on a foam mattress would be a problem. If it is there are special sheets that can help you. I use one now and it's great for me.
                                    > I don't know what it's called in English but translated directly from Danish to English it would be called a "turning sheet". I know they use it a lot in hospitals and nursing homes to help turn people over but you can use it yourself too. It's not a full lenght sheet but is to be placed on the bed so i runs from you knees to your neck. I guess one can make it yourself since it's just cotton linen and in the middle there's a big piece of sateen woven "slippery" fabric sowed onto it. It is so big that you can fold the ends underneath the top mattress. I'm sure you'll be able to find out what it's called in the USA and who to get a hold of one.
                                    > I know that some stores in Denmark have beds that you can borrow and try out for comfort of a couple of days so that might be a way to try out the foam mattress and see if it's bettering the situation. In Denmark you can also go to the municipalties aids depot and try out things - maybe you have that option too.
                                    > I would apply for one tomorrow via the municipalty but I've already exceeded my limit for the aids I can get this year. Unfortunately beds with conforming foam mattresses are very very expencive in Denmark so there's not much of a chance of me affording one myself - Looking at it the price is as much as 3 months rent and rents are ridiculously high in Denmark we use about 3/4 of our income on rent.
                                    >
                                    > Anyway, back on track.
                                    > You advice about laying down on the floor is quite helpful unfortunately I can't do that as I also have what's called Scheuerman's disease in my back which makes it very curved. Since it's a malformed vertabra I can't stretch my back enought to lie on the floor. I'm not sure that my twitching is connected to my hip replacement cause it doesn't matter if I'm on my back, my side or on my stomach when in bed and heat seems to make it worse. I haven't noticed if warm water therapy make it better but I'll try to remember noticing it when I (hopefully) will be approved for water therapy again in the fall.
                                    > Thanks for all your great ideas some of them will have to be tried out if I it's poosible for me here on the other side of the world.
                                    >
                                    > Helle-Karina
                                    >
                                    > [Non-text portions of this message have been removed]
                                    >
                                    >



                                    [Non-text portions of this message have been removed]
                                  • 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 17 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:

                                      >



                                      [Non-text portions of this message have been removed]

























                                      [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 18 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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