First, I would like to introduce myself.
My name is Eileen and I have had MS for
about 20 years with much pain along the way.
My primary neurologist could no longer control
the pain, and sent me to a pain management
specialist because he had run out of options
I admire him for that move. He said it was
out of his league and sent me to a specialist
which many doctors would not do.
I went to one , and the first thing we had
to do was wean me from the medications that
I was on then. After that we went from one
medication to the next until we found what
would work . One of the problems I had ,as
I'm sure many of you have is spasticity.
Spasticity of the legs was a very painful
problem for me. i felt as if someone was
pumping air into my legs and it had nowhere
to go, thus causing pain.
I took baclofen by mouth and reached a
dose level of more than120 mgs per day.
I was so tired because that is one of the
main sid effects of baclofen, besides the
added weakness of the legs. I felt like
I was always sleeping. When you have an
exacerbation,that is a different kind of
tiredness. i felt like i had no life at all,
nor did my husband.
The pain management doctor told me about
the bacfelcon pump. Like a lot of people
I was hesitant. It was something very
different from the way that I ever thought
I would receive medication. it is something
I wish I would have started long before I did.
I love this story about how the doctor got
me to really think about the change in my thinking.
He said if I were a rabbit and he was dangling
a carrot in front of me, what was he trying
to tell me. I got the message and really
started giving it serious thought. I now
have had the pump for over a year. I now
really feel like it has given me a new life!
THe pump is surgically implanted just
under the skin with a tube coming from the
top direstly to the spinal cord.
It looks like a hockey puck and weighs
only
8 oz. In this way, the medication goes
directly where it should, and not take
the scenic route thoughout my whole body
in the process of getting there. The only
thing that you need to have is PATIENCE
while the best dosage level of medicine
is being caculated for you. If you have
the patience, you will really love the results.
You no longer will have that tired feeling
and many of my friends and relitives have
noticed the big difference in me for
the better.
I was going to schools to try to educate
people about ms, what it is and how we have
to learn to live with it. It had been
several months since I had been back to
the one school, and the instructor said
he noticed something very different
about me,but he couldn't put his finger on it.
I told him about the pump. Of course,
it sparked his interest and he was very
happy for me. He said I looked so much
better than the last time he saw me.
It was really a wonderful feeling to know
I felt better, and other people have seen
the difference too. I really feel as if a
new life has been given to me. Naturally ,
it will not help everything.
Before the pump is given, you must undergo
a test. It is something like a spinal tap,
but itsn't. Please don't let this scare you .
It's worth all the worrying you might do.
The doctor takes a small amount of fluid out
of your spinal cord, and puts thisin a test
dosage of the bacfelcon in. Those doctors
like to keep us around,so you do have to
stay for a couple of hours to make sure you
don't have any side effects, but most important,
if it helps you. You won't need the doctor
to tell you if it worked for you. The good
part is that you are a candidate for the
Bacfelcon pump which will change your life.
Because I 'm thin, the pump is slightly
noticeable. If someone is medium weight it
is not so noticable.
( I hope that came out right) I used to think,
oh you must have a flat stomach and
be in fashion, but you know what, I really
don't care because it helps so much.
depending on the amount of medication being
used will tell you when you will have to go
back for a refill. You will have been given
a tape to watch, along with the doctor's
speech, but I have found that most people
want to hear about it from someone who
already has it, and thats why I'm writing
this article. When the pump is refilled,
it is nothing at all. I'm sure that you have
all seen those very tiny needles there
sometimes are used to take blood.
They put a plastic circular piece on the pump,
to make sure they know right wher to put
the needle when filling the pump.
Many times I had said, done already?
It is really nothing. THe battery in the
pump lasts from about three to five years
before it has to be replaced. Many people
have the pump and are walking around.
I have that many people who have the pump ,
get the wrong impression that you can't
walk after you have one. Everyone is
different and the doctors will work with
you to correct the dosage. You have to be
honest with the doctor, as he can't tell
how you feel.
So as I said before, just have a little
patience. if any one has questions,
please feel free to e-mail me at
Lobosgirl@AOL.com or come visit me at
this web site.
There is no question too small to answer
if it make you feel better. i hope this
has helped anyone who was considering the pump
----Eileen 5-3-98
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