Our stories run so similar its scary. I am in the propranalol stage
right now. Except the speech problem is sudden lockup of the face
muscles so I can't talk when trying to force speech and think at the
same time. I am a Ph.D. studying PD right now, and working on a grant,
and just sort of dawned on me that I seem to be in the early stages,
very much like you have described. Kind of lends an urgency to it all.
I have had symptoms since about 18 that I would now trace to early
traces. How common is it to have very early symptoms and warnings?
Long before diagnosable?
Cordially,
Charles W. Scouten, Ph.D.
myNeuroLab.com
5918 Evergreen Blvd.
St. Louis, MO 63134
Ph: 314 522 0300
FAX 314 522 0277
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www.myneurolab.com
-----Original Message-----
From: Brightline [mailto:[log in to unmask]]
Sent: Friday, May 17, 2002 6:45 PM
To: [log in to unmask]
Subject: Introducing myself
Dear Friends:
I am not new, but I have not been very actively involved so far,
except
sending a couple of comments once in a while. I am 68, running on 69. I
am
an officially retired, but very much active, profesor and my area of
research was and is cancer. I have been having what everybody thought
was
ET (action tremor) since my teen age days. But, come to think of it, I
had
a slight facial mask from my twenties or thirties. I recollect in
1972-73,
some of my close friends use to tell me: "You have a nice smile and a
good
heart. Why don't you use them to your advantage, instead of putting up
a
sorrow face all the time?" I am not sure if I had an early onset PD
with
very little true PD symptoms (no resting tremor, posturl instability,
drooling etc.) As a hind sight, I am sure it might be true.
In 1998 (at my 65th year), when I was lecturing in my class, I
noticed a
slight, occasional slurring of my speech. I did not even dream of PD in
thse days. Then, I started noticing my right arm did not swing as good
as
my left. My action tremor in my right hand became very highly visible
and I
began to notice by 2000 my right leg was doing the same in synch with my
right leg, when I did smething with my right hand fingers. Buttoning my
shirts takes a lot more time. By the end of 2001, I could not reproduce
my
signature; however my handwriting did not become tinies andtiniesas it
should be for PD; simplyh I cannot right one word without my hand
running
crazy all over the place. I was lucky I knew typing. Even that becomes
very difficult now days, since a couple of my fingers would not want to
bend
when I type some letters!
By the year 2000, I was convinced some thing strange was going on
There
fore I saw a neurologist. She told me I ws having ET and not PD. Then
I
went and saw the only local Movement Disorder Specialist who thought tht
I
was developing PD on top of my ET. I went through the initial phase of
denial and sought a second opinion from another MDS at Bethesda
Univesity
Hospital. She assured me that I did not have PD and prescribed
Propranalol.
When my lo al MDS heard this, he refused to see me! Propranalol had
only
transient effect on my tremor; soon I started developing high blood
pressure
(this is a beta blocker and is not supposed to do this!), increase in
weight
and blood sugar, and lethargy and low pulse rate. I stopped taking
Propranalol; I lost my gained weight, blood sugar became normal, normal
pulse rate, and my action tremor was getting worse. I have developed
mild
postural instability and occasinal drooling, along with sightly
progressed
speech slurring.
I saw another neurologist who prescribed sinemet CR, which I have
not
yet started taking. In the meanwhile, the news about mirapex and requip
delaying the progression of PD. I am wondering if I should see another
MDS.
I am waiting to get an appointment with Dr. Tony Lang in Toronto.
More about me later.
Raj
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