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332Re: [Myotubular_Myopathy] From: Toni, 15th October 2003- Answer to Pat

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  • redscootee@webtv.net
    Dec 4, 2003
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      Connie,
      It does seem that with mtm there is a pattern of symtoms. The only thing
      to remember though is that each case is different and can progress
      slower for some and faster for others.
      First off I am also overweight and I KNOW it exacerbates the mtm but it
      is NOT why I have the symtoms I do. Hey I don't need the doc to point
      out I could stand to shed some pounds after all I am not blind yet. lol
      I am the one who has to cart this excess baggage around with me
      everyday.
      This is JMHO but it sounds like both you and your mother are manifesting
      carrier of mtm.
      I use myself as a measuring stick for my son. I look at myself at his
      age and see he is going to be worse off than I am. He is 28. He has a
      very prounounced gait when he goes up stairs. Looks like he has to drag
      his body along each step he takes. I used to have to go up steps one
      step at a time always leading with one foot and then brining the other
      one up. Heaven forbid their was not a rail I could not get up would have
      to lean on someone for support. I used a cane before I went out on
      disability in 95. I initially went out on disability due to the
      congenital break in my back. However now I cannot walk more than a dozen
      steps without my husbands help and then it is very difficult.
      I am 52 and am in a chair all the time now. I can get into and out of
      the bathroom by hanging onto things. Am absolute dead weight if I fall
      and cannot get up at all on my own. I have to almost have my legs locked
      under me before I take on my own weight again. When last I was able to
      do stairs I would put my one foot on the next step up hang onto the rail
      and my husband would pull me up using my other hand.
      If your mom would like to email me direct feel free to give her my addy.
      You can use this one or I am on the one at our site lots of times. It is
      mdaww@....
      I have the nerve pain, spasms, cramps etc. in my legs too. Can be very
      annoying especially if it wakes me up at nite. I was on neurontin but
      the both thimes they bumped up the does my leg has gotten really nasty
      ulcers so I am off of that for good. I have heard from several other ppl
      who have had a bad reaction to neurontin also. I take baclofen,
      mestinon, and lortab for the md, nerve pain and cramps. Nothing they can
      really give me for the nerve damage besides the neurontin. I guess like
      you and your mom we have to suffer. Do you ever get the reaction from
      ppl they are surprised having md that you are in pain? I get that quite
      often here as well as ppl saying too bad you have MS. GRRR! (S) What
      tests did they run on you and your mom if any for the md and the
      neuropathy?
      take care and God Bless
      Look forward to hearing from you.
      pat
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