Joined: 01 Apr 2006 Posts: 3 Location: El Paso, Texas
New But Not Really New Posted: 04-10-06 19:31pm
Hello everyone,
I just found this board, and was
wondering if you all could give me some
insight.
Let me explain... I have been dx (11
yrs) with a "myopathy of unknown etiology"
in 2003 a neurologist I visited thought
it was possibly lgmd.
I went about my business and daily life
trying to get thru each day the best I
could...But my symptoms worsened the last
couple of years. I am a nurse, and had
to stop working last jan'05 because I
couldnt take the hours or the being on my
feet that long. The weakening of the
muscles is/ was really not my biggest
problem at the time. I also have many
similar symptoms of ms, with a cousin who
has the disease and figured that is what
it all is. They have yet to test
everything to rule it out.
I went to mayo in nov last year, did
another emg and found that the myopathy is
indead not from inflammation with a cpk
still in the 500's which is good because
it was 1900 way back when.
I wondered if anyone here has "myotonic
md" and could give me some feedback as
after extensive research and a md dx
(followed by some kind) need to get the
type dx yet. This neuro at mayo said I
did have some myotonia in eyes and hands,
and "long facies" which even I have no
clue what that meant. I have dealt with
this pain etc for many years without an
accurate dx, and have another neuro appt
on the 12th. The mda said they could get
me into see the md dr here, but my
insurance wont cover so they "might pay"
for me. To my knowledge since this is
ruled out not to be inflammatory and
myopathy is muscle disease that does mean
it is a form of md I was told. Am I
right?
Thanks for your time and sorry so long.
|
angie thornton
New User, Becoming EHEALTHy
Joined: 19 Mar 2006 Posts: 5 Location: Doncaster
Lgmd Posted: 04-26-06 10:48am
Hi its angie had any joy getting a
diagnosis yet i've just come back from my
specialist he only needs to see me every 9
months but is still waiting for results of
the muscle that's being tested keep in
touch
