Denise,
This is great news! Hang in there, friend.
Mariana
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.
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