Leigh...

I've had PD for 21 years, diagnosed for 15 years and am 54 (years old now.
I've had a unilateral pallidotomy (PD resume).  I am a forum manager on The
Microsoft Network (MSN), and my forum is the "Chronic Disease & Disorders
Forum." (work resume)

That said, since the Fibromyalgia (hereafter referred to as FMS) Newsgroup is
the most active one, both in posting and chats, in my entire forum, for a
person who DOESN'T have FMS, I've learned quite a bit about this disease.

>From your List message, I believe you're over medicated, tho not necessarily
for each INDIVIDUAL disease.  However, since PD and FMS are SUCH diverse
diseases requiring very different treatments - no commonalties at all that I
can see - it seems to me that the physician(s) you're dealing with are each
doing their own thing, and that your primary care physician is not being very
responsible for doing HIS job in acting as a bridge ... a coordinator for
tying in the treatment of BOTH diseases together.  Thus  your PD MD and your
FMS MD--Pain specialist seem unaware that some sort of INTEGRATED treatment
plan should be worked up for you.

FMS is a miserable disease with lots symptoms including terrible pain, while
PD carries it's own bag of miseries.   Since each has it's own unrelated daily
meds, if there's no apparent coordination between your physicians, you're
ending up with what seems to me to be a rather bizarre drug combination to
take each day, IF YOU LOOK AT IT FROM THE PD POINT OF VIEW.

Fact is, I don't SEE any PD-related drugs in your list, tho prolly the Xanax
is doing double-duty as an anti-depressant.  IF the leg and toe cramps are PD
related, rather than FMS-related, you'd most likely get significant relief
from 800 to 1200 I.U.'s of vitamin E and possible from calcium each day... so
that might be one drug you can dispense with (if you've gone ahead and filled
the prescription).

Leigh... you indicated you "don't dare complain" to your primary care MD, and
that has me horrified.  You MUST, if not 'complain," at the very least,
QUESTION your physicians!  Each time you have an office visit go prepared with
a list of questions, and don't leave that office without being fully satisfied
that you've received an answer to each that YOU feel is the most optimum
answer you can get at that moment.   And if any answer brings up new
questions, get an answer to THEM!

It's VERY important you not permit yourself to just float along like a leaf in
a rushing stream, tossed wherever the water goes.  YOU must be in control of
your treatment, if at all possible.  It's OK to make your physicians stretch
their respective brains reaching out for information to help bring your the
optimum treatment.  And it's OK to say to them "I have some questions I"d like
you to answer - NOW."  In fact, it's better than OK.... it's imperative to
your treatment.

Please stay in touch and let us know how you're doing, 'kay?

Barb Mallut
[log in to unmask]





-----Original Message-----
From:   Parkinson's Information Exchange  On Behalf Of goddog
Sent:   Saturday, April 05, 1997 6:18 PM
To:     Multiple recipients of list PARKINSN
Subject:        Re: you'ved outed a lurker

hi all,
i've been lurking and gathering information on the list for quite
a while now and thought some of the recent posts say it's time for me to
introduce myself. my name is leigh williams, 39/2, another
yo pwp. the pesticide discussion is quuite intriguing to me, as
i worked in greenhouses and tree farms here in nc for years. i
was exposed to many pesticides and herbicides on a daily basis.
i truly believe that plays a major role in what's happened to me.
also, the fibromyalgia post brings me out as well. way back in 1984, i was
diagnosed with fibromyalgia. i am of the opinion it
was pd starting. ten years later in 1994, i began to have severe
tremors, inability to turn over in bed, a great ability to "toss the
salad", or any other food, it was just that i was doing food art
all over the place if you get my drift. i was also extremely slow,
stiff, and had severe leg cramps.
here's a question for the group: here are the meds they currently
have me on: neurontin 1200mg. am & pm, with 800 mg. at midday and evening.
i take norflex 100mg. am & pm. i take .5
xanax 4 times daily. these meds have reduced my symptoms
dramatically, i have occasional tremor, freeze once in a while ,
and am still stiff as hell, but trying to cope. my balance has not
improved however. last friday my dr. put me on dantrium 25g
at bedtime for foot and leg cramps. haven't gotten it filled yet so i can't
comment on that.
yes i'm getting to the question. have any of the othre young
onset folks been on a similar regime, or do any of you folks
who are so knowledgeable think this is appropriate? i do see
a movement disorder specialist, but my primary care is at a
local pain clinc. it seems like a nasty soup of drugs to me, but
i don't dare complain, as it has me going most of the time anyway.
also wanted to say briefly how much i appreciate the listserv. i
regularly take info to both mds off this list.
much thanks to you all.
shake, rattle and roll..............leigh