Joseph:
Based on the info you give, I would definitely see a neurologist again,
but find a movement disorder specialist. If it does turn out to be
Parkinson's stick around - except for the occasional bickering, you can
learn a lot from this list! :)

Good Luck!

Wendy

-----Original Message-----
From: Parkinson's Information Exchange Network
[mailto:[log in to unmask]] On Behalf Of Joseph Essertier
Sent: Thursday, December 02, 2004 8:04 PM
To: [log in to unmask]
Subject: Introducing myself and asking a question

Hello.  My name is Joseph Essertier.  I am an American
living in Japan.  I teach English and comparative culture
at a college in Nagano City, Japan, where the Winter
Olympics were a few years ago.  I also do research on
modern Japanese literature.

I subscribed to this list because i wanted to ask some
questions to people who know about and have experience
with Parkinson's.  Experience has taught me that patients
usually know some things about their own health problem
that their doctors don't know or understand.

I have not been diagnosed with Parkinson's, or even tested
for it, but i just started to wonder about this disease
the other day.  I didn't know anything about the symptoms,
except for the classic tremors that one sees in famous
people with PD in the mass media.  I just read about the
symptoms on the internet for the first time two days ago
and was surprised that i have many or most of the
symptoms.  I thought it was a disease that elderly people
got -- only elderly people -- and that the tremors were
very extreme, like the whole arm shaking.

I read this article yesterday:
http://www.umm.edu/patiented/articles/what_parkinsons_disease_what_cause
s_it_000051_1.htm

In that article, the parts that caught my attention the
most, that describe the kind of neurological problems i
have been having are:


*       Tremors may first be only occasional, starting in one
finger and spreading over time to involve the whole arm.
The tremor is often rhythmic, 4 to 5 cycles per second,
and frequently causes an action of the thumb and fingers
known as pill rolling. [This is the first time i have
heard this expression, "pill rolling," but it describes
very well one of the first things that started to worry me
-- about 4 years ago.  I get that in many different
fingers, but mostly fingers in my right hand.  I get
those, but i also get faster side to side twitches in my
fingers, especially during electrical storms, which we get
a lot of in Japan.  Once in awhile all the fingers in my
right hand will start to curl up, like my hand is trying
to make a fist but failing.  I notice this sometimes while
i am standing.  Once in awhile i feel embarassed when i'm
standing and talking to someone and this happens, and i
flex my hand to make it stop].

I also get what i call "twitches" on my lips, eyelids, in
my toes, arms, legs, and other places.  They only happen
when the muscle involved is at rest.  I notice them the
most when i'm in bed, either when first waking or going to
sleep.

*Muscles may become rigid ( akinesia). These symptoms
often begin in the legs and neck.
[I have suffered from a very stiff neck for the last 6 or
7 years, but what surprises me is how on some days, it is
perfectly fine, with no stiffness at all.  I have tried
all kinds of stretching, with no luck.  I also experience
rigidity in my foot, where i cannot pull the foot/toes
upward, esp. when riding a bike.  And i have some rigidity
in my fingers sometimes].

*Intestinal motility (the ability to swallow, digest, and
eliminate) may slow down, causing eating problems and
constipation.
[In the last year i have developed problems with
constipation, for the first time in my life.  The worst
has been this autumn.  My lower abdomen has been hurting
when i first wake up each day lately.  I have had trouble
swallowing for the last few years, to the point where i
don't start eating unless i have something to drink close
by].

[I have all of the following]:
*       Orthostatic hypotension. Some patients experience a
sudden drop in blood pressure when they stand. This can
cause dizziness and fainting.
*       Changes in sensations of temperature, hot flashes, and
excessive sweating. My wife often says during the summer
she can't believe how much i am perspiring.
*       Leg disorders. Cramps and burning sensations in the legs
are common.

I'm not sure if one would call it depression because
i'm usually pretty content with my life and everything,
but once in awhile i start crying about things that are
not a big deal and the crying becomes uncontrollable,
where i want to stop but cannot.  (My son recently said to
me, to my surprise, that he had never seen me cry -- not
that i think that real men don't cry.  I'm just not the
crying type.)  The first time that happened was about 5
years ago while watching a silly soap opera.  I don't
watch soap operas and watch very little TV in general.
Later i could not explain to myself why that soap opera
got to me.  I don't remember what the story was about at
all now.  I have had a number of similar crying bouts
since then, where later i cannot understand why i was so
upset.

Most of the other symptoms in this list i guess i
experience but am less sure about -- either i'm not sure
if my symptom is being described or if mine is not that
bad.  For example, "shuffling."  I am not sure if it looks
like shuffling.  My stride seems shorter than it used to
be, and i sometimes feel a little difficulty in pulling my
leg upwards as i lift my feet for a step forward.  That
could just be tiredness though.  But i have been making a
conscious effort over the last year or so to pull my legs
up higher and take longer strides.  I have always been the
type who walks fast, but recently i am surprised to find
people on the street walking past me, where i am the slow
one.  And i have had trouble with stairs for the last 7
years or so.  About 7 years ago, i remember a friend, who
was in her late 50s, say to me as we were walking up the
stairs, "Come on old man!  Why are you so out of breath."
I have always been into exercising and sports -- riding my
bike everywhere, running, baseball, and other other things
-- and always strong and healthy, so i was surprised to
hear her say this, and similar things have happened many
times since on stairs.  I always have trouble keeping up
with the other train passengers while walking up stairs in
train stations in Japan now.  I'm 37 years old by the way.


My thumbs twitch a lot at times, always moving in the
direction of the other fingers.

Somewhere i read something about excessive salivating as
one of the PD symptoms.  I have had trouble with that a
number of times in the last few years.  This autumn i have
had two periods of really extreme salivating, both for
about 2 weeks.  I had some sores in my mouth during the
2nd, latest period, and my dermatologist said the sores
would heal naturally.  It happens a lot in fall here to
people.  So that may or not be the same as the other
salivating, which i don't remember being accompanied by
sores in my mouth.  A month or two ago i woke up one day
with my pillow case wet from salivating while sleeping.
No sores then.

Fatigue, of course.  I have gone through a few periods of
extreme exhaustion, that wouldn't be solved by rest.
Three summers ago i had the summer from hell, where i
would go to work at 9 AM, leave for home at 4 PM sharp
(yes, really easy hours), take a nap until dinner time, go
to sleep after dinner, and wake up the next day at 8 AM.
All i did was sleep and rest, but was still tired.  That
lasted for at least 2 months.  It was a very hot, humid
summer, but i had been through many such summers in Japan
before.  What was so special about that summer?  I still
don't know, but i think the last two summers have not been
a problem because i changed my diet.  I have a near
vegetarian diet now with mostly whole grains.  I really
avoid white bread and white rice now because of the
constipation.

I was diagnosed with seborrheic dermatitis the other day.
That's what got me started thinking about Parkinson's
because i read that people with Parkinson's get it a lot.
I have suffered from this for at least the last 5 years,
but never went to the dermatologist about it.  I thought
it was just dandruff, which i guess it is, but i have
major flaking or scaling on both sides of my nose, and all
the other typical places.  That has just become steadily
worse.  Only in the last year did it really start to
bother me, where my head and face were incredibly itchy.

I have another skin condition, which used to be called
"neurodermatitis," which i know because my grandmother had
it -- she always wore white cotton gloves because of it --
but is also called "housewife dermatitis" in Japanese.  I
can't remember the doctor's name for it at the moment.
It's like psoriasis.

Three years ago i was diagnosed with "panic disorder."
I'm not sure if i really have it because usually there is
a psychological component.  I have had about 5 panic
attacks in the last 5 years, the first one on a packed
"bullet train," but i rode trains hundreds of times after
that without fear, and never had another attack on the
train, which is the typical place for panic disorder
patients to get them in Japan.  (The trains are very
crowded and there is less oxygen, so...)  The doctor gave
me the equivalent of Xanax, in case i had another attack,
but i never took it.  He recommended that i take another
drug every day, but i said no thanks.  I avoid drugs of
all kinds.  If i can live with the symptoms, i'd rather do
that than face the side effects of the drugs.

Finally, one problem i had that might relate is epilepsy.
I had grand mal seizure(s) -- not sure if it was one
seizure or more than one -- at the age of 3.  I took
phenobarbitol for a year or so, until my parents became
worried about how drowsy and unfocused i was, and took me
off of it.  Never had another grand mal after that, but
was tested for it in high school, and the doctor said i
was still having petit mals, which i occasionally noticed.

This is a very long-winded introductory message, but i
guess my question is, "Do you think that these symptoms
are serious enough that i should go to a neurologist?"  I
already did go once before, to a neurologist in Japan.
That was about 5 years ago, when my symptoms were not as
bad as they are now.  He said that i was having these
twitches in my fingers, toes, and face -- this was before
the really strong ones, like all my fingers starting to
curl up, or the time my whole right hand wobbled back and
forth -- because i was just really "tired."  He
recommended rest and some tranquilizers.  Again, i said no
thanks to the tranquilizers.

I went to cardiologists twice because the panic attacks
made me think i had a heart condition.  My heart is very
healthy though.

The only doctor who actually helped me was a doctor in the
States.  Without actually seeing me in person, he guessed
that i would benefit from omega oils?  Fatty acids.  So i
take cod liver oil now.  I also take, on his
recommendation, vitamin B complex and magnesium
supplements.  The magnesium really relaxes me and helps me
to sleep through the night.  I was waking up too early for
awhile.  Thanks to him, i think, the twitches have
actually been not as bad during the last 2 years, as they
were during the previous 2 years.  New symptoms have
appeared and some other things have become worse, but the
twitching, esp. "twitching" of my heart (panic attacks),
has become much less frequent.

One other thing i did, upon the recommendation of some MS
patients on the internet, was have all my mercury fillings
removed and replaced with composite resin.  I had about 8
"silver fillings," which are like 50% mercury and only 35%
silver.  That seemed to improve things a little, but
nothing dramatic.

I am wondering if i should consider Parkinson's and maybe
try going to a neurologist once more, maybe a different
one here in Japan, or to one in the States the next time i
am there.  I have read a little about Alzheimer's.  An
expert on that disease on an MS site recommended that i
read a certain book on Alzheimer's, which i assume was
because he thought i might be a candidate for that.  I
think i had low blood sugar problems, which seem to have
gone away as i increased the amount of chlorophyl-rich
foods i eat and started eating brown rice.  Low blood
sugar is a cause of Alzheimer's, as is mercury.  As
mentioned, i considered MS.  I also read about ALS.  At
this point, i don't know what the problem is and i am just
avoiding neurotoxins, eating healthy and safe food,
getting moderate exercise and rest.  That is my strategy
in a nutshell.  I'm doing okay, except for certain
inconveniences and some pain once in awhile, but i am
thinking that the sooner i understand what the cause of
all these symptoms is, or what the causes are, the better.

Thank you.
Joseph

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