Hi Miriam! Thank you so much for responding. I have had the same
tests and muscle biopsy. My doctors in the beginning gave two ideas
for diagnosis and that was md or ms. So I am lucky in the sense
that it didn't take years to diagnos me with the right disease, it
took more like a few months. I know what you are going through with
the bruised knees. I too fall constantly!!!!! I have zero
cordination and have a ton of balancing issues. When I was first
diagnosed it was like once or twice a week. But about 5 weeks ago I
got the flu and it made me much weaker. Now I am falling about two
to five times a day. Mostly for no reason other than being clutsy.
I think the one thing that I have found in common with everyone so
the fear of how this effects or family and friends. I am very
fortunate to have an amazing family that spends so much time
researching, going to appointments, calling doctors across the USA,
and helping me do whatever it might be. I also have an amazing
fiance that has supported me. It is probably hardest on him because
for the longest time I refused to talk about having this disease
with him. I love him so much that it hurts thinking that his future
will be spent taking care of someone in a wheelchair. And what about
my daughter? I hate how this effects everyone around me. For this
reason alone, I refuse to let this disease take over.


--- In dysferlin@yahoogroups.com, "mmejia_28" <mmejia_28@...> wrote:
>
> Hi, my name is Miriam..
> I am from San Francisco, about to turn 21 years old. I started to
> notice signs of weakness during my senior year in highschool as
well.
> I have always been into sports, primarily soccer. Sophomore year I
> went in for a routine physical to play soccer and ended up getting
> blood drawn. Those results showed i had an extreme amount of
> elevation in enzymes which led doctors to believe there was
something
> wrong with my liver. My doctors at first were not letting me play
> soccer for fear that i might get a blow to my side further hurting
my
> liver. Of course i know now that my liver is fine..About 2 years
> later is when doctors finally realized the problem was in my
muscles.
> An electrocardio..something,(feels like rubberbands, they measure
> electric charges in the muscles), and a muscle biopsy as well as a
> lot of blood tests showed that i too have LGM2B. At first i was
also
> in denial until i stopped playing soccer and almost all activity
for
> that matter, gained some weight and now i am feeling the weakness
> more and more. My doctor said the best thing for me is to loose
> weight obviously and exersise (swimming recommended). It is hard
for
> me to walk up a steep flight of stairs even with the handrail.
Just
> walking down the street I fall more often and get bruised knees
every
> other week (it doesnt help that i'm clumsy) and my balance is
> affected. I have a great boyfriend who knows about my disease and
> understands that in the future i am going to most likely need a
> wheelcahir and tries to help out when he can.
> It has been a bit depressing to know that i have this disease and
> that my life as well as my loved ones will be affected in the
years
> to come. I have never met anyone with this type of disease but
> hearing everyones experiences really helps me out in understanding
> and coping with this disease. Thanks everyone please keep on
> posting...
> --- In dysferlin@yahoogroups.com, John B <bluedestin@> wrote:
> >
> > Hello, my name is John
> >
> > The funny thing is I am originally from Minnesota. I now live
in
> Arizona and have met no one with my condition here. I too am 24
> years old. I noticed signs of weakness senior year of High
School.
> I wasn't running as fast as I used to and figured that I was just
out
> of shape. Around that time I went through testing to join the
army.
> They found that my calf muscles were not the average size which
made
> it impossible for me to complete some of their physical tests. I
> went through many tests just as you did and then found that I had
> Miyoshi Myopathy. My doctor prescribed creatine and CoQ10 for
me.
> However, I tend to forget to take those so I don't really know if
> they work well. I am going to get married in a year. She came
into
> the relationship completely aware of the situation. I warned her
> that I may be in a wheelchair someday. I think that day will be
> soon. I am having difficulty walking normal even with braces. I
am
> thinking about an electric chair and hand
> > controls for my car when my situation requires them. It's
really
> nice to meet someone in the same age group with this type of
> disease. I don't feel so alone anymore. I hope we can keep in
touch
> and discuss more about common experiences or new knowledge.
> >
> > samanthasmith7 <hushfire777@> wrote:
> > Hi, my name is Samantha and I was diagnosed in March
of
> 2007 with
> > LGMD2B at the age of 24. I first started showing signs of
weakness
> > at the age of 20 but contributed it to a car accident I was in
> where
> > I was ejected out of the vehicle. I got pregnant in March of
2006
> > and had a complicated pregnancy. I was about 5 months along when
I
> > started noticing that I was getting weaker. I had problems
getting
> > up the stairs without using the handrail. My daughter was born
in
> > December and within 3 months it became nearly impossible to get
up
> > the stairs or getting up on my tip toes. I was referred to Mayo
> > Clinic in Rodchester, Minnesota where I have had every test
> > imaginable to confirm my diagnosis. Now, almost a year after
being
> > diagnosed I am finally coming to terms with it. I've been
extremely
> > angry and incredibly sad about being diagnosed with such a
disease.
> > I worry about being able to do things with my daugher, now 14
> > months, and her and my fiance having to take care of me in the
> > future. My family and I have jokingly called me an "ostrich"
> > because I have not wanted to face this. So until recently I have
> had
> > no interest in trying to get better, no matter what the method
may
> > be. As a result, I am already a stage weaker. Now I am really
> > scared.
> > As many of you have found, not much information is available on
> this
> > disease, what makes the process slower, or what "cures" it. It
is
> > also near impossible to find someone who has it. That is why I
am
> > so happy to be a part of this group. I can't wait to speak to
> > someone, anyone, who is going through what I am and to hear what
> > kind of things you are doing to treat this disease.
> >
> >
> >
> >
> >
> >
> > ---------------------------------
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> Search.
> >
>