Thank you for sharing your story. I can relate with you and the
being depressed. I still can't believe that this has happened to me.
I wonder if I ever truely with accept it. I wish I could because it
would be a lot easier on me. And I constantly fear how this will
effect my relationships with my family, friends, and especially on
my fiance. We lived together and had a daughter before I was
diagnosed. He loves me, that I know, but I can't help but wonder how
strenuous this will become on him. I too refuse to let this take
over my life. Right now, I am trying to do something about it. I am
on a vitamin regimen that seems to be helping with my fatigue. I
also have learned the importance of lots of sleep. I am also
starting physical therapy this week. Have you tried anything?

-Samantha


--- In dysferlin@yahoogroups.com, "Kendra" <khurte3@...> wrote:
>
> Hello everyone,
> I am really excited to see so much activity with the Group. It is
> really encouraging to see so many of you living productive lives.
>
> FYI: My Life With Limb Girdle 2B
>
> I too was misdiagnosed in the beginning. In my early twenties I
was
> told that I had high liver enzymes and had a liver biopsy. The
> results were, "I'm not quite sure why your enzymes are so high.
The
> biopsy showed no irregularity in liver function. There are just
some
> women of color who have high liver enzymes and there seems to be
no
> apparent cause." As time went on my "clumsiness" progressed to
> difficulty climbing stairs falling for no reason and major
fatigue.
>
> It was not until early 2000 that the doctors began to believe that
> something was really wrong and I was misdiagnosed with
polymyositis.
> I was treated with large doses of steroids that made me blow up
like
> a balloon and worsen my condition. I then was seen by another
doctor
> at Johns Hopkins for another year before he became frustrated with
my
> case and referred me to NIH (National Institutes of Health) in
> Bethesda, MD. After 4 months of tests and interviews my MD was
> finally narrowed to LGMB 2B. I was then referred to the MDA
Clinic @
> Johns Hopkins were I am currently followed.
>
> This disease is what I refer to as a "Hot Mess", a life
disturbance.
> I was young a recent college grad on my was to grad school,
married
> raising a daughter and stepson working full-time and enjoying my
> life. I was scared to know that I had something that the doctors
> could not explain or treat, let alone heal! There was no support
> group or hot-line to call for support and assistance. I resolved
to
> continue living my life as best as I could and to be a great mom
and
> wife. I have recovered from broken bones, sprains and concussions
as
> a result of the MD. The depression is the worse, but I have been
able
> to manage that as well. People are stunned at how resilient I
am. I
> feel blessed to wake each day and have the ability to breath
life. I
> refuse to let this "thing" completely dictate to me how I will
> continue living my life. I have learned that to preserve my
strength
> and prolong my ability to ambulate, I must use assisted devices.
I
> currently use a can and/or rollator walker around the house. In
> November 2007 a fell braking both the tibia and fibia in my right
> ankle. Now that I am Bionic (1 plate with 8 screws and 3 screws
in
> the other bone), I have decided to look into getting a power
chair.
> I have a portable scooter that I use when I am out for long
periods
> of time, but I can usually get by with my walker. I am not
driving
> at this time and am in the process of getting hand controls. (this
> will probably take 2 years; USA politics)
>
> Unfortunately, or maybe fortunately my husband and I have
separated
> and are in the process of getting a divorce. He could not handle
> it. My life without him has been much better for my health. I am
> less stressed and more confident in myself. The old Kendra is
back!
> The go getter is back in the building.
>
> Be safe and enjoy life! :)
>