That's so wonderful, Denise!!! I'm happy you found a great doctor!!!

As for the pump, I go in on Monday for the eval. I use 80 mg of baclofen a
day, PLUS OTC meds. *sigh* And it still doesn't help much.

Dana Marshall
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http://www.geocities.com/Athens/Styx/5326

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On 5/7/99, at 10:39 AM, Denise D. Goodman wrote:

>There is truth transfixed in trite expressions.  "What a Difference A Day
>Makes," is a prime example.  Yesterday, I could barely function.  Today
I'm
>feeling great!  I wish I could have related my entire experience with you
>yesterday, but alas, my synapatic firing kept getting jammed.  I couldn't
hit
>the cognative mark :D
>
>First I'd like to thank everyone who gave me places to look for addtional
>information.  In addtion to technical info, I was hoping to speak to a few
>people who may already utilize the device.  I did get a few names which
I'll
>check out.  In the meantime, I just have to tell you about the Doctor I
>found!
>
>I don't believe I related the last experience I had.  I know I should have
>shared this with you, but I was so upset, I couldn't even bring myself to
>talk about it.  Two months ago, I was bounced from Primary Care Physican,
to
>Orthopedic Dr., then he pushed me onto a Neurologist.  As I understand,
most
>CP cases are managed by a Neurologist, so I felt, "At last I was in the
right
>place."  My mom drove me in and I know I'm prone to exaggeration, but
honest
>to God, the man had me in the office for less than five minutes.  I wasn't
>examined.  He asked me a few cursory questions only.  First he suggested I
go
>to an Orthopedic Dr.  I told him, "That's who sent me here to see you."
Then
>he actually said, "Well, I don't see what the problem is.  You were born
with
>CP.  You should be used to it by now.  Nothing more can be done for you."
>
>I walked out to write the check and mom said, "Did you forget something?
>Isn't the Doctor back there?"  I told her I was done, paid the check, and
>that I was heading to the car.  My said she'd be right behind, she was
>finishing up a conversation with some people she'd been chatting with who
>were waiting to be seen.  She came outside, looked me in the eye and said,
>"Okay, what's wrong.  Something bad happened I can read it on your face."
So
>sitting on a bench, 34 years old, I start crying like a big baby.  I told
her
>what he said.  I was so disappointed and hurt and felt stupid.  She told
me
>he was the jerk and we should look for another doctor.  I was just so
>shell-shocked, because I'd been in pain for months and was despertae for
>relief.  I couldn't even bring myself to think about going to another
doctor.
>
>Well, hubby's employer just changed Health Insurance again, so I needed to
>find a doctor quick who could perscribe my maintance drugs.  I decided to
>again try a Neurologist.  (Another trite expression coming)  The
difference
>between them was like Night and Day!  This doctor saw me before I filled
out
>ANY paperwork even.  The nurse had me put on a gown!  Geeze, last time I
>disrobed for a Neuro was about 17 years ago!  He gave me a COMPLETE exam.
He
>took my Full history, including the details about my birth (which no one
has
>ever done!).  He told me he is working on a few studys.  I figured as much
>from the questions.  In the meantime, he breaks right in the middle of the
>exam and says, "Oh! You know, I just read an article on CP in one of my
>journals.  Hold on, I'm going to my office and see if I can find it, be
right
>back."
>
>Good Gravy Batman- this guy was like some super-hero doctor.  A doctor who
>reads the journals?  A doctor who listens?  A doctor who has alternative
>options for treatment?  - I almost had to pinch myself!  I told him he
>restored my faith in the medical profession.  I also confided in him about
my
>recent experience with the other doctor.  He seemed to be more upset by it
>than I did.  As if this dinosour doctor besmerched "His" profession.  I
still
>can't get over it.
>
>Any way, he suggested the Baclofen pump because I currently take 60MG
daily
>by mouth.  He said it is extremely inefficeint deleivery.  Using the pump
a
>minisucle dose could be administered directly into my spinal cord.  The
>side-effects are lessened because the drug doesn't travel through the
entire
>blood stream and through all of the organs.  It makes sense, but I'm still
a
>bit leary.  He also wanted me to stop taking the pain killers, and switch
to
>something non-narcotic.  I told him no problem.  He thinks I'm addicted,
but
>I haven't taken any since I've seen him and no DT's, no withdrawls.  I
only
>took 1/2 to 1 pill a day, but I've been on them for years, so it caused
him
>some concern.  I also told him, I take the pain killers as a last resort.
>It's not so much the pain (I do have an extrememly high tolernace for
pain),
>what drives me to the medication is feeling so stiff and achey.  I told
him
>it's like I'm wearing a cement over-coat.  I'm weighted down and
everything
>snaps and crackels when I move, if I can move.  He suggested the
additional
>Ativan, which so far is really doing the trick!  It's so bizzare I can
hardly
>stand it!!!!!   - You know how when you get in the pool, you feel that
>unfettered freedom of movement?  Then the second you step on dry land you
>feel about 50 pounds heavier and completely awkward?  Well with the added
>Ativan, my body has a fulid movement I haven't felt in years.
>
>I notice my hands don't curl up into the "Claw" when I'm watching tv.
When I
>walk, I usually do it on the balls of my feet.  Now if I concentrate, I
can
>get in a few "heel-toe, heel toe"  Geeze, I haven't been able to walk
>heel-toe for about 10 years!
>
>I'm not getting my hopes up because when I first went on Baclofen five
years
>ago, I felt a marked improvement, but as my body adjusted to the
medication
>the control was gone.  Still, it's a good feeling.  There are some
negatives.
> I feel sort of tired out and droopey, but HEY!  At least I'm loose and
>droopy, instead of tired out and tight.
>
>Thanks for letting me share.  I'll keep you posted on Dr. Brody's
treatments.
> OH- he also suggested I get an MRI to see where the actual brain damage
is.
>He said that it can't be corrected, of course, but it is good to have a
>reference, so if there are neurological changes, they can be seen and
treated
>accordingly.  He said too many doctors chalk a patients problems up to the
>obvious (like the cp).  He said it is important to stay alert, because
other
>things can go wrong.  Did I tell you this guy was great or what?   - Well
>that's all.  Take Care, Be well, and For Pete's sake, try and find a good
>doctor.  It really does make all the difference.  - Denise.