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Wednesday, February 18, 2009

Pin Cushion

"Pin Cushion"

What is it about the medical profession that makes doctors
think I'm a pin cushion? Okay, it's true that I'm
deaf-blind and physically impaired and they aren't quite
sure why. It's true that I need medical treatment to
achieve good health. But sometimes it feels like I get
nothing but needles, needles, needles... and that hurts.
Let's take a look at my medical history. It seems to have
started in 2006 when I received eight months of IVIG
treatments. That stands for Intravenous Immunoglobulin.
It's basically an IV medicine that is made from donated
plasma. It's for people with autoimmune conditions such as
MS, Lupus, and Aids. I don't have those diseases but, at
the time, the doctors believed my immune system was
attaching my nerves.
Once a month, for five days in a row, a nurse would come to
my house to administer the IVIG treatments. Each day's
infusion would take about four hours. Then they would
disconnect the IV from the bag, leaving the actual needle in
my arm until the next day's treatment. The idea was that I
could go through all five days on just one needle. it never
happened. Either the needle would get clogged or bent or
the vein would blow. I'd usually need to be "stuck" three
or four times during each round of treatment.
The IVIG made me really sick. I dreaded each round. Then I
moved to a new state and became a patient at one of the
nation's leading medical clinics. They did some testing and
decided I didn't have an autoimmune disorder and didn't
have the kind of nerve damage that responds to IVIG. Was I
upset that I went through eight months of useless treatment
that made me sick? No, I was just so happy it was over.
There's also the tests they do for nerve damage called
Electromyogram (EMG) and Nerve Conductivity Studies. I can
never remember which is which. Since I've always had both
at the same time, I call the full thing an EMG. It's easier
that way.
For the first part of the test, the doctor shoots
electricity into your limb and measures the response of the
shocks. This isn't exactly fun. It makes my legs dance and
jump around. But it is bearable. The second part involves
sticking needles into your limbs. Then you have to flex the
muscle against the needle as they measure the reaction of
the nerve. Oh... It's painful! I should know. I've had
this done three times over the past seven years.
My quest for a diagnosis has made me the victim of many
blood tests. I have this great doctor at the new clinic.
He's like a much nicer version of Dr. House, MD on TV. He's
the guy who handles genetic cases that no one else can
Most of the genetic tests I've had were blood tests. It's
more a matter of testing for various diseases and ruling
things out. I don't know what I have but I can give you a
long list of what I DON'T have.
Last year they even did a skin biopsy as a diagnostic test.
They take something that looks like a tiny cookie cutter and
slice out two bits of skin. The wound looks just like a
snake bite. (My son thought that was really cool.) Then
they cloned the cells for testing. That's right, there are
dozens of little Dot Bug clones out there.... or at least
skin cell clones, anyway. It's kind of freaky. Still no
positive diagnosis.
My newest study in needles involves Botox injections in my
feet. My feet are pretty messed up. They are paralyzed
and almost totally numb. The right foot is a bit twisted.
The left foot has severe hammer toe. I wear leg braces and
toe splints but that doesn't treat the underlying issues.
Botox is designed to relax muscles. By injecting Botox
into the muscles of my feet, the twisting and hammer toe is
relieved, and the muscles can be stretched and strengthened
in a more normal manner. Amazingly enough, it really does
So today I found myself at the clinic for my second round of
Botox injections. (It's not a permanent treatment. You
have to redo them every three month or the effect wears
off.) This time I got an increase in jabs - two in each
ankle, one on the bottom of each foot, and two in my right
calf. Eight injections in all. Unfortunately the doctor
had trouble finding the muscle in one spot and had to repeat
it several times. When I was finished, I got to go to the
lab to have blood drawn for ye another genetic test.
I am sore tonight and feeling quite like a pin cushion.
Eight injections and a blood test... I think I have the
right to complain for one night. Wouldn't you?
But I'm a trooper. I just keep on trudging no matter what.
Yes, it hurt. But if it helps, it will make the future just
a little bit easier for me. At least that's my theory.
So I made an appointment to return in June. We got in the
car and headed back to my little city. Then we stopped at
Arby's for lunch - my favorite fast food restaurant. Roast
beef and curly fries.... Mmmmm.... It's these simple things
that make life wroth it all.

1 comment:

  1. Hello, I found you through another friend on I like reading what you write. Thank you for sharing your experience with the rest of us.