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! :)