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Re: [Myotubular_Myopathy] My Left Leg is swollen and pain

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  • toni.abram1@btopenworld.com
    Hello Angela I saw your message on Facebook and replied briefly there but your message is a bit more detailed here and sounds a bit more familiar to me. I do
    Message 1 of 5 , Aug 20, 2009
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      Hello Angela

      I saw your message on Facebook and replied briefly there but your message is a bit more detailed here and sounds a bit more familiar to me.

      I do not experience swelling in my legs but I do experience soreness and tenderness in my left thigh.

      Mostly, the pain is at night but it is not all the time. Sometimes I think it is when I have been over doing things, which in my case is not doing much at all. Other times I think it could be a type of cramp or my body stretching out after a long time holding it in a particular way.

      Would possibly describe this pain as a mild throbbing and often it feels like someone stabbing my thigh with a knitting needle. On a number of occasions, I have woken in the middle of the night, with the pain being severe - feels like something is tearing or being ripped apart but then when I wake and change my sleeping position the pain subsides.

      Have experienced this for sometime now; it isn't constant and doesn't seem to be getting worse, except for a period earlier this year, when every time I went to stand up from sitting, it felt like I was getting an electric shock in my thigh - this has stopped now. However because the pain has been ongoing for sometime now, it was recommended that I have an MRI scan, which I did, last week - now waiting on the results. My feeling is, that what I am experiencing is part of the CNM and I just have to put up with it but we felt it was better to be safe than sorry.

      Would definitely recommend that you seek medical advice for what you are experiencing too.

      Toni xx

      Sent using BlackBerry® from Orange


      From: "Angela H."
      Date: Wed, 19 Aug 2009 17:27:38 -0700 (PDT)
      To: <Myotubular_Myopathy@yahoogroups.com>
      Subject: [Myotubular_Myopathy] My Left Leg is swollen and pain

       

      I have had problems with swelling and since this past Monday, it has been sore like someone punched my whole leg and it throbs at night. My kids touch it and it feels like they are sticking a knife in my leg especially at night. Help!

      Sincerely,
       
      Angie
      Patrick 26 weeks 1lb. 14oz. 9/17/88 - 02/03/05
      Danielle 35 weeks 5 lbs. 9 oz. - now 6 yrs.
      Cherisse 35 wks. 6 lbs. 2.7 oz. - now 5 yrs.
       
       
      ^.  .^
      > T  <
       
       

    • Connie Guinn
      Hi Toni, I have experienced the same pain that you are describing. It is very painful and annoying. I didn t realize that others were dealing with this too.
      Message 2 of 5 , Aug 20, 2009
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        Hi Toni,

        I have experienced the same pain that you are describing.  It is very painful and annoying.  I didn't realize that others were dealing with this too.  You are right, it may well be from the CNM/MTM.  Please let us know the results of your MRI and testing on this.

        xo Connie
         

        Connie Guinn, Director

        MTM-CNM Family Conference

        kookla_g@...

        www.mtm-cnm.com

        281-997-3581










        From: "toni.abram1@..." <toni.abram1@...>
        To: Myotubular_Myopathy@yahoogroups.com
        Sent: Thursday, August 20, 2009 3:20:31 AM
        Subject: Re: [Myotubular_Myopathy] My Left Leg is swollen and pain

         

        Hello Angela

        I saw your message on Facebook and replied briefly there but your message is a bit more detailed here and sounds a bit more familiar to me.

        I do not experience swelling in my legs but I do experience soreness and tenderness in my left thigh.

        Mostly, the pain is at night but it is not all the time. Sometimes I think it is when I have been over doing things, which in my case is not doing much at all. Other times I think it could be a type of cramp or my body stretching out after a long time holding it in a particular way.

        Would possibly describe this pain as a mild throbbing and often it feels like someone stabbing my thigh with a knitting needle. On a number of occasions, I have woken in the middle of the night, with the pain being severe - feels like something is tearing or being ripped apart but then when I wake and change my sleeping position the pain subsides.

        Have experienced this for sometime now; it isn't constant and doesn't seem to be getting worse, except for a period earlier this year, when every time I went to stand up from sitting, it felt like I was getting an electric shock in my thigh - this has stopped now. However because the pain has been ongoing for sometime now, it was recommended that I have an MRI scan, which I did, last week - now waiting on the results. My feeling is, that what I am experiencing is part of the CNM and I just have to put up with it but we felt it was better to be safe than sorry.

        Would definitely recommend that you seek medical advice for what you are experiencing too.

        Toni xx

        Sent using BlackBerry® from Orange


        From: "Angela H."
        Date: Wed, 19 Aug 2009 17:27:38 -0700 (PDT)
        To: <Myotubular_Myopathy @yahoogroups. com>
        Subject: [Myotubular_ Myopathy] My Left Leg is swollen and pain

         

        I have had problems with swelling and since this past Monday, it has been sore like someone punched my whole leg and it throbs at night. My kids touch it and it feels like they are sticking a knife in my leg especially at night. Help!

        Sincerely,
         
        Angie
        Patrick 26 weeks 1lb. 14oz. 9/17/88 - 02/03/05
        Danielle 35 weeks 5 lbs. 9 oz. - now 6 yrs.
        Cherisse 35 wks. 6 lbs. 2.7 oz. - now 5 yrs.
         
         
        ^.  .^
        > T  <
         
         


      • Temple McLaurin
        Hello Angela I guess I am coming at this completely different due to the fact that my youngest son(19 months now) has had a blood clot in the lower extremity.
        Message 3 of 5 , Aug 22, 2009
        • 0 Attachment

          Hello Angela
          I guess I am coming at this completely different due to the fact that my youngest son(19 months now) has had a blood clot in the lower extremity. It can appear larger than the other limb and it can seem swollen. But more than that if the area is red and hot it does need medical attention. If it is coupled with breathing issues- one can't catch their breath with minor activity like climbing stairs, or there is a fatigue factor. Blood clots can be life threatening and do deserve immediate attention. I hope you feel better soon. Let us know the results of this experience. Take Care Temple Mclaurin
          --- On Thu, 8/20/09, toni.abram1@... <toni.abram1@...> wrote:

          From: toni.abram1@... <toni.abram1@...>
          Subject: Re: [Myotubular_Myopathy] My Left Leg is swollen and pain
          To: Myotubular_Myopathy@yahoogroups.com
          Date: Thursday, August 20, 2009, 1:20 AM

           
          Hello Angela

          I saw your message on Facebook and replied briefly there but your message is a bit more detailed here and sounds a bit more familiar to me.

          I do not experience swelling in my legs but I do experience soreness and tenderness in my left thigh.

          Mostly, the pain is at night but it is not all the time. Sometimes I think it is when I have been over doing things, which in my case is not doing much at all. Other times I think it could be a type of cramp or my body stretching out after a long time holding it in a particular way.

          Would possibly describe this pain as a mild throbbing and often it feels like someone stabbing my thigh with a knitting needle. On a number of occasions, I have woken in the middle of the night, with the pain being severe - feels like something is tearing or being ripped apart but then when I wake and change my sleeping position the pain subsides.

          Have experienced this for sometime now; it isn't constant and doesn't seem to be getting worse, except for a period earlier this year, when every time I went to stand up from sitting, it felt like I was getting an electric shock in my thigh - this has stopped now. However because the pain has been ongoing for sometime now, it was recommended that I have an MRI scan, which I did, last week - now waiting on the results. My feeling is, that what I am experiencing is part of the CNM and I just have to put up with it but we felt it was better to be safe than sorry.

          Would definitely recommend that you seek medical advice for what you are experiencing too.

          Toni xx

          Sent using BlackBerry® from Orange

          From: "Angela H."
          Date: Wed, 19 Aug 2009 17:27:38 -0700 (PDT)
          To: <Myotubular_Myopathy @yahoogroups. com>
          Subject: [Myotubular_ Myopathy] My Left Leg is swollen and pain
           
          I have had problems with swelling and since this past Monday, it has been sore like someone punched my whole leg and it throbs at night. My kids touch it and it feels like they are sticking a knife in my leg especially at night. Help!

          Sincerely,
           
          Angie
          Patrick 26 weeks 1lb. 14oz. 9/17/88 - 02/03/05
          Danielle 35 weeks 5 lbs. 9 oz. - now 6 yrs.
          Cherisse 35 wks. 6 lbs. 2.7 oz. - now 5 yrs.
           
           
          ^.  .^
          > T  <
           
           


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