Hi Everyone,

As most of you know by now, I will not be receiving an intrathecal
baclofen pump in LOndon. The team did a double blind placebo controlled
study, and found that the placebo worked just as well as the baclofen
did... This is only because, both times I was given a lumbar puncrture,
the neurologist hit a nerve. Even though I knew the second day was the
real baclofen (was just weaker than usual), I could not differentiate
b/w
that pain and the pain I would have on a normal day. I wrote that down
on
all of my pain rating scales they were giving me to do. So I did not
think
the testing was all that fair, especially with the doctor inflicting
pain.
I have been taking antiinflammatories for 2 days vand morphine every 1
and
a half hours and still feel like crap.

Even worse, my own Mom CAME HOME TO TELL ME THAT IF THIS DID NOT WORK,
THE
PAIN MUST ALL BE IN MY HEAD. She does not tell this to her father who
has
phantom limb pain, but she will tell it to her daughter. IT hurts wors
than the pain does.

My physiatrist in Ottawa was kind enough to make a long distance call
and
talk to me. He asked if I had questioned the the team about that, and
about other intrathecal medications, but was told no. The physiattrist
said that at this point, he wants to find the best meds for me, and
then
find a way to get them into a pump-- I will be less tired, etc. He
assurred me that the pain was not in my head... but I was so hurt w/ my
Mom's comments.

Any comments, suggestions, etc.
Jenn

PS Sorry if I sent two of these, but the message is not coming through.