Neurontin was on my "drugs tried" list from 1997.  Nothing happened.  I am
REALLY glad it helps you.  NPR ran a story last week (I think it was last
week, you can search their archives) about Pfizer marketing the bejabbers
out of Neurontin for everything from seizures (for which it was developed)
to the common cold (almost).  Pfizer was wining and dining MDs like nobody's
business so they would prescribe Neurontin for a range of maladies.  They
even read an internal memo from Pfizer's marketing head that was so corrupt
with greed I thought I was going to be physically ill.  Sorry for the
soapbox....

Thanks for the encouragement about the site.  I just think if we all
marshall our energies into one contact point we could be so effective.

Mag, girl, you're on the resource list too.  Thanks for your encouraging
note.

I really think this could work...I saw it happen right before my eyes with
the leukemia thing.  There's no reason a bunch of old gimps couldn't pull
off something just as good.

-Kyle

-----Original Message-----
From: Pam Dahl
To: [log in to unmask]
Sent: 6/29/02 1:55 PM
Subject: Re: Rough go right now...

Hi Kyle,

Sorry to hear you're having a rough time. Hope your pain doc came
through.
Have you tried Neurontin? I find it helpful. Just a thought.

Yes, yes, yes, to a website! This is so needed. Let me know if I can
help -
I have some HTML skills. I'm thinking about writing an article for New
Mobility on cp and aging, and helping with the website would be a good
way
to do research.

Take care,
Pam


> Hey all...
>
> I haven't been on the list today as it's been a particularly bad day
> pain/spasticity wise.  Things have been getting progressively worse
for
> about a week.  I left work about two hours early yesterday, slept
about
two
> hours last night and could not grasp a razor or toothbrush.  Needless
to
> say, I did not work today.
>
> Called the pain doc's office at 9:00 and said that I urgently needed
to
see
> the physician.  I was told that the earliest possible time was July
26th.
> Fine, but could someone "call something in for me?"  That was 9:00, I
called
> back at 2:00 and re-emphasized the urgency and was told that someone
would
> get back with me eventually (today??  this year??).  The prospect of a
> weekend with no pain-relief isn't something I'm relishing.
>
> The thing that really sucks is that I signed a "contract" at the
beginning
> of my "treatment" (Jan. 2001), agreeing that I would not seek pain
> medication from any other physician.  In return, I would be provided
with
> timely treatment and urgent situations would be responded to in kind.
>
> To keep my mind off of my own pain, I renewed my "web searching" for
> information re: CP and Aging, or some reference to "Post CP Syndrome".
Not
> much has changed in the six years I've been with this forum.  Still
not a
> recognized phenomemon--unless, of course, you're the one getting older
with
> CP.
>
> So, with strengthened resolve, I would like to create a "point
source", a
> web clearinghouse, if you will, of data relevant to the subject.  The
web
> sites that are extant seem to have fizzled.  Would any of you be
interested
> in pursuing something like this?  I would envision something of a
repository
> of info for patients and healthcare professionals alike.  It could
even be
> of statistical relevance.
>
> Off the cuff, whaddya think?
>
> -Kyle
>