295Re: [Myotubular_Myopathy] From: Toni, 15th October 2003
- Dec 1, 2003Toni,
Here is a link to our site. <a
href="http://www.wtv-zone.com/mdaww/indexzep1.html">Wide World of MD</a>
Let me know if you have problems linking to it.
I know I had some trouble with sending emails to an aol addy and also a
friend of mine at aol says hers to me keep coming back to her.
Sorry to hear about your uncles passing. Never an easy time to lose
someone but the holidays make it especially hard. Cancer is such a
I hope your dad is doing better. Did they figure out what was going on?
Please be proactive with your health since there is a history of heart
problems in your family. I stress this point to my son since his sister
passed away due to complications linked to the xmtm.
You are so right about maintaining a positive attitude. I am a firm
believer in you need to make the best of what you have. I know I used to
get embarassed when I would fall or struggle going up stairs. I guess
being in the chair now is easier cuz ppl see right off there is
something wrong. Where we live also the ppl are most helpful and
friendly. If they seem uncomfortable I will say hi and then they will
You are so right about certain products being toni/pat proof. I have to
have my husband open anything marked child proof. lol I just hand them
over instead of trying to struggle with them.
When I first started to try and find out information on mtm it was few
and far between. I know when I found your site I was thrilled. Up until
then I had not met anyone with a dx of myopathy. I had linked to this
site earlier too but there was not much activity. I was glad to see when
the list picked up. Also that there are adults on the list. I have had
trouble finding any adults to speak with about having md much less mtm.
I wish I would have known you back in '90. My girlfriend and I took a 23
day trip to Great Britain and Ireland. I am Scotch, Irish, English,
German and Bohemian. Thus the interest in GB and Ireland. I did not know
at the time I had md. While we were on our trip I fell 6 times. In
Oxford I fell down some stairs at a car park and broke a bone in my
foot. I hobbled around the rest of our trip not knowing it was broken.
This was only 4 days into our trip. I have since met a few ppl with
children who have a type of myopathy from England. I had thought this
could be the link as to where mine came from. However, my dad is the one
who is Scotch, Irish, English. He had the blood test and it came back
normal. We suspect it was my mom's side cuz she had some of the same
symtoms I do. She passed away in 87 before we were dx'd. She had another
heart attack and went in her sleep. Another reason I go in for yearly
checkups for my heart and get after my son to do the same.
How is your new 'superhuman wellies' working out? I get the
burning/cramps in my legs too. Do you take any medication for the md? I
take mestinon, baclofen and until recently I had also been taking
neurontin for some nerve damage in my one leg. Does anyone else take
meds for their myopathy? I found out on the increased dosage of
neurontin I got ulclers on my one leg again. For the last two months I
have had a nurse come in twice a week and wrap it. A couple of years ago
when they tried to increase the neurontin I got the same thing. They are
especially bad this time but the proform wrap is the only thing which
will clear it up. I will continue to have it wrapped for at least
another month or two.
It seems to me on other lists I have seen where ppl mention their child
also has one leg shorter than the other. I want to say everyone has this
but not sure. It seems to me quite a few with a myopathy have it and a
lift seems to be the only thing which helps. Anyone have any more
Looking forward to hearing from you.
take care pat
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