332Re: [Myotubular_Myopathy] From: Toni, 15th October 2003- Answer to Pat
- Dec 4, 2003Connie,
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
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
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
take care and God Bless
Look forward to hearing from you.
- << Previous post in topic