RTK.NET Mail 139282 Apr 9 14:37:47 1996
Dear Stephen,
Having recently been through a long round of neurological tests
and consultations, I could very much relate to the fear and frustration
you expressed in your account of this visit (I'm on this list as a friend
and activist, not as someone who has been diagnosed with PD). I also had
a resting tremor in my right hand, but a host of other symptoms that, along
with my age, made MS a more likely cause than PD. At many times during this
ordeal, I have felt that it would actually be better to be diagnosed with
something so that I could work on accepting it (and if lucky, even treating
it) and trying to adjust and move on to the next phase, whatever that might
be.
Regarding the HMO problems, I recommend getting a hold of the book
listing participating physicians. You can call around and ask about their
areas of expertise, check with your local PD organization and see if they
are known to them, and then ask your primary care physician to refer you to
that neurologist. After you've gone further along in the process, you may
wish to pay to see the best neurologist you can, but from what you've describe
d
I believe you may, like me, just not be diagnosable at this stage. On
the other hand, it does not seem from your message that you have much faith
in this neurologist. the comment "everyone has some kind of tremor" sounds
as dismissive to me as it did to you. You deserve better. When you do get
a comment like this, however, be certain that you have been clear how
debilitating your problems are. I learned that I frequently understated
things, because feared getting accusations that I was being "hysterical" or
making too much of things.
If you talk to enough people with any neurological disorder, you
will find someone whose early symptoms were much like yours. It can be
frustrating to hear, "well, it could turn out to be MS, it could turn out
to be a movement disorder like PD, but it's probably something we'll never
really know the cause of but will hopefully go away on its own." On the
other hand, there really is some good news. You have enough typical results
on the neuro. exam to show that you don't have convincing signs of another
neurological disorder. I also failed everything balance oriented, but
there are many potential causes for balance trouble, and hopefully this
will either pass on its own or you'll find a better treatment for these
problems.
Stay strong, Stephen, I know this is really hard.
Sherri
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