175Re: [Myotubular_Myopathy] Re: Number of People with Centronuclear Myopathy
- Nov 3, 2003Hey Toni,
Thanks for the link on the European Conortium. Very interesting indeed!
I know the Beggs Lab here in the USA is doing research on mtm. I have
been thinking about getting in on that research.
Let me know if you ever hear back on your DNA testing. My son and I had
DNA testing done at least 10 years ago. I don't know if we even have the
results or don't remember where they sent the tests out too. I know they
had to take more tubes from me than my son. (GRRR)
I am still waiting to hear back from a lady up in Canada about the
number of patients with mtm. I forgot to tell you one of the ladies on
the list said the sheet that was sent did not cover all of Canada it was
missing the east part of the country.
Wow you have been busy on your site. Spent quite a bit of time there
yesterday. Loved the pic of you and your dad. I have one of me and my
husband I will have to dig out and post one of these days. I have
finally written up a story about our journey with mtm. Do you want to
post it on your site too?
What kind of job are you doing now? Great you are able to work flex
hours and get to physio. When you are on the stander does it bring you
upright or are you hanging from your ankles? I just can't picture it? I
would think with flex time you should be able to go once a week. Can you
bring in a note from the doc? I know in the US they tend to let you go
to appointments when it is written from a doc.
take care and keep in touch.
<a href="http://www.wtv-zone.com/mdaww/indexzep1.html">Wide World of
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