John 'n "All"....
I'm continually astounded by the variety of medical tests so many of us go
thru before getting a definite diagnosis of PD (or PD is then ruled out).
I seem to have missed all those tests tho, 'cause despite going to several
MDs... GPs, orthopedist, neuro, another GP, and more, over the 7 years I
sought a diagnosis, the only REAL test I was ever given besides a general-type
physical was an EEG. Even tho the EEG was normal, the neuro who gave me that
test was the one who eventually FINALLY diagnosed PD.
By the way... the only other "tests" he performed was to have me walk 10 feet
down the office hall and back AND he took a good look at my face to see if he
saw the typical "Parkie mask."
THAT diagnosis took place 7 years after I first noticed those initial vague
symptoms. From where I am after almost 23 years of living with the disease,
and from what I've learned about Parkinson's in general, I'm ASTOUNDED that
the eventual diagnosis was based upon ONLY one medical test and the neuro's
educated guess! ("After all," he assured me, "I've seen hundreds of people
with Parkinson's over the years, tho never one as young as you")
AND I'm even MORE amazed that I accepted THAT as ENOUGH to base a diagnosis of
such life-impacting magnitude upon. Truth is, I was RELIEVED and even
grateful to at LAST be able to put a name on what had until then been called
everything from "creative imagination," "female problems," it's in your head,"
<they should only KNOW, huh?>, Lupus, MS, and God-only-knows-what-else.
It seems to me that the path to a correct diagnosis, for many of us, is really
kinda a hit-or-miss procedure.
Barb Mallut
[log in to unmask]
----------
From: Parkinson's Information Exchange on behalf of John I Quist
Sent: Thursday, April 16, 1998 11:32 PM
To: Multiple recipients of list PARKINSN
Subject: Re: Symptoms prior to formal diagnosis
On Thu, 16 Apr 1998, Barbara Mallut wrote:
> NOW - back to your original question.... I went undiagnosed for seven years
> before one MD FINALLY listened to me when I told him what my admittedly
vague
> - but nonetheless uncomfortable - symptoms were. Since I initially began
> experiencing these symptoms at age 32, there was a
> "medical-knee-jerk-reaction" with previous MD's I'd been to (six over seven
> years) trying to get a diagnosis - THAT was "IF you weren't so young I'd say
> you have Parkinson's Disease."
Yeah... I have had very vague symptoms since I was ca. 18 years old, but
it was when I was 27 that the symptoms started to be troublesome, the
stiffness in my left arm was joined by tremor. Working with computers,
that's *very* annoying...
Of course, my first neuro told me (after a spinal tap and some bloodwork)
that it was MS. My physiotherapist, tho, said that she could have sworn
that it was PD. God bless that woman. :)
When I told the neuro what my PT had said, the doc hesitated for a
fraction of a second, then just shook her head.
Then, this past autumn, I went to the local university hospital to try to
get on to one of the MS research projects. That neuro, who has done MS
research for ten years, said that I don't have the symptoms of chronic
progressive MS at all. His guess was that I have PD. *bingo!*
But, after doing a lot of other tests, MRI among them, I still don't have
a diagnosis. The MRI showed some very small damages to the brain that
could point to MS, but they are much too small to be the basis of a
certain diagnosis.
Going to a MS support meeting, I found that none of them had the symptoms
I have! They had hypersensitive skin, extreme fatigue, partly paralyzed
limbs etc.
Coming here and being here for a couple of months together with all the
wonderful people in this group, I recognize my own problems. Stiffness in
the mornings, tremor, sometimes problems to initiate movement, even if
that's rare since I started on the Madopark.
If you have something that falls outside the frame, some docs just try to
push you into a frame that fits.
- Never stop believing in yourself! Keep fighting!
(You see! I'm out of the pit of depression again, and this time
I'm ANGRY! I'm going to war with the government authority that gives
financial support to students, but that's another story. If you like, I
can tell you that one too? It's a frustrating story about burocrats...)
How do you spell that, by the way???
Take care of yourselves, my dear list-family.
Yours,
John 29/0
--
[log in to unmask]
PS. I include a couple of jokes about religion, since they are so popular
around here... ;)
~~~~~~~~~~~~~~~~~
A Priest and a Rabbi found themselves sharing a compartment on a
train. After a whle, the Priest opened a conversation by saying "I know
that in your religion you're not supposed to eat pork ... Have you actually
ever tasted it?
The Rabbi said, "I must tell the truth. Yes, I have, on the odd
occasion." Then the Rabbi had his turn to interrogate. He asked, "In your
religion, as a Priest, you're supposed to be celibate, but ...."
The Priest replied, "Yes, I know what you're going to ask. And I'm
afraid I, too, have succumbed once or twice."
There was silence for a while. Then the Rabbi peeped from around
the newspaper he was reading and said, "Better than pork, isn't it?"
~~~~~~~~~~~~~~~~~
I was walking across a bridge one day, and I saw a man standing on
the edge, about to jump off. So I ran over and said "Stop! Don't do it!"
"Why shouldn't I?" he said. I said, "Well, there's so much to live for!"
He said, "Like what?" I said "Well....are you a religious person or an
atheist?" He said, "Religious." I said, "Me too! Are you Christian,
Buddhist, Jew?" He said, "Christian." I said, "Me too! Are you Catholic
or Protestant?" He said, "Protestant." I said, "Me too! Are you Baptist,
Methodist, Episcopalian?" He said, "Baptist." I said, "Wow! Me too! Are
you Baptist Church of God or Baptist Church of the Lord?" He said, "Baptist
Church of God!" I said, "Me too! Are you original Baptist Church of God,
or are you reformed Baptist Church of God?" He said, "Reformed Baptist
Church of God!" I said, "Me too! Are you reformed Baptist Church of God,
refomation of 1879, or reformed Baptist Church of God, reformation of 1915?"
He said, "Reformed Baptist Church of God, reformation of 1915!" I said,
"Die, heretic scum", and pushed him off.
~~~~~~~~~~~~~~~~~
Hope you enjoy them as much as I do. :)
