Hi! Eileen:
Thanks for the info an care and concern.
It is not that I do not know what is going on. Yes! I didn't in the
first few months after diagnosis nor did I realize the seriousness of PD
compared to ET. I want to start with the right kind of treatment after
consulting an MDS. I also want to explore the pros and cons of DBS before I
do anything.
At present, it thought about 30% of the people with ET, develop PD at
later ages. Some people think that ET symptoms followed by the onset of PD
symptoms is one disease, while others think it could be a case of two
different diseases overlapping. If this is true, one can start treatment
for both (eg. mysoline or propranalol for ET and sinemet or requip o mirapex
for PD. The problem is people even did not realize until recently PD is an
inherited disease. It was though only two years ago, that PD is inherited
in abour 7-8% of the cases, the rest being idiopathic. But, ET is
considered to be inherited in about 30% of the cases. That was one of the
reasons, the other being lack of resting tremor in my case, that threw at
least two of the doctors that I consulted to the conclusion that I have only
ET and not PD. I think one of the reasons for this lack of statics on the
inheritance of PD is that PD develop in very lae ages in most of the cases
and therefore, it would have been difficult to get data on the frequency of
familial PD. Now at least two genes have been identified in connection with
susceptibility to PD, in addition to various environmental factors.
As my PD symptoms became more pronounced in the past year or so, I am
convinced that I have PD. I just want to get the opinion of an MDS with
regard to the best drug and dose I should start off with.
Thans again.
Raj
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----- Original Message -----
From: "Eileen Werndorfer" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Saturday, May 18, 2002 5:43 PM
Subject: Re: Introducing myself
> Hi, my name is Eileen and I am 52. Two weeks ago I was told I have PD. I
> found this site and have been lurking in the background for a couple of
days,
> but was just reading a letter from Raj who seems to be unsure of what
he/she
> has. Seems doctors keep telling you different things. I just wanted to
tell
> you about this place I went to in New Haven Connecticut. My doctor here
> thought I had PD, but wasn't 100% certain because my right hand doesn't
have
> a resting tremor, its more of a an action tremor and my right leg has an
> internal tremor. My right arm doesn't swing like my left and I just don't
> have the same strength on my right side as my left. In any case my doctor
> sent me to the Institute for Neurodegenerative Disorders, where they are
> doing test studies to see if by injecting a radioactive iodine isotope
they
> can see a difference in the amount of dopamine in each side of the brain.
In
> my case, the scan showed that the left side of my brain was not producing
as
> much dopamine as the right side.
> You should ask one of your doctors to call IND at 203.401.4300 and ask for
> Dr. Marek or Dr. Jennings. Hope this is helpful
> Eileen
>
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