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RE: [Myotubular_Myopathy] REAGRDING MYOPATHY

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  • Wendy
    Hi Dhanakumar S I m so sorry to hear this. Has he had muscle biopsy diagnosis to say exactly what type of myopathy he has? Generally and from what I know, the
    Message 1 of 2 , May 13, 2010
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      Hi Dhanakumar S

      I’m so sorry to hear this. Has he had muscle biopsy diagnosis to say exactly what type of myopathy he has?

      Generally and from what I know, the x-linked form of Myotubular Myopathy is reported as the most severe, but deemed ‘non-progressive’ and the other forms (known as Centronuclear Myopathy) are thought to be slowly progressive. All children/adults are different even with the same form, and will achieve their own best.

      I hope he has good physiotherapy input (not too much to wear him out but enough to keep his muscles active) and swimming if he can tolerate it is the best exercise of all.

      My son is 14 also and has x-linked Myotubular Myopathy (MTM).  Although he was born more mildly affected in that he never required ventilation at birth, and he did manage to walk and even run until he was about 12. His teens and rapid growth have been very challenging and as such he has now lost the ability to walk and weightbear completely and relies on a powered wheelchair all the time to get around and needs to be lifted to move. But I know of other affected boys who have actually managed to maintain walking through to adulthood and actually got stronger once they got through puberty (rapid growth). 

      If you want to read any of the individual stories you could take a look at these UK websites:  http://www.myotubulartrust.com or http://centronuclear.org.uk/theinformationpoint2010/pages/about/about.html or the US linked to from here http://www.mtm-cnm.com/apps/links/

      If your brother is weaker in one leg, it could be that he has contractures in the joints of that leg and they are not working to full capacity because they are tight.  It’s really good to stretch the ligaments in the joints to keep them fully functional every day, but very gently.  After a warm bath when the muscles are warmed is a good time to do this.  A good physiotherapist will show him how he can do it himself.

      Best wishes and please don’t hesitate to ask if you have any other questions.

      Wendy

      (Zak’s mum)

       

      -----Original Message-----
      From: Myotubular_Myopathy@yahoogroups.com [mailto:Myotubular_Myopathy@yahoogroups.com] On Behalf Of ecodhanan_2005
      Sent: 21 February 2009 11:11
      To: Myotubular_Myopathy@yahoogroups.com
      Subject: [Myotubular_Myopathy] REAGRDING MYOPATHY

       

       

      DEAR SIR,
      MY YOUNGER BROTHER(AGE 14)HAS BEEN FACTED BY MYOPATHY, HIS CPK LEVEL
      IS 8000 IU. HE IS STRUGGLING TO WALK WITHOUT ANY HELP, SPECIFICALLY
      HIS RIGHT LEG NOT HAVE ANY STRENGTH.
      WHAT ABOUT THE TREATMENTS, WHAT ARE ALL THE POSSIBLE HEALTH
      IMPAIRMENTS IN FUTURE.
      KINDLY REPLY ME.

      DHANAKUMAR S

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