Correct Diagnosis, Movement Disorder Centers, Health Care Team... WAS: Re: loss of sensation

[Murray Charters <mcharters@xxxxxxxxxxxxxx>]

On 2 Nov 2003 at 20:27, susan robinson wrote:

Hi all,

I've sought feedback before, and am again -  it's great having all you
members to seek help from. :)

I'm not yet diagnosed with pd.  The doc suspects ms, but the mri was clear
(which doesn't prove anything, I know), and now he wants me to have an
electromyogram - to see if my problems are caused by nerves or muscles, he
says.

Has anyone else had an emg for diagnosing anything? The only reference I can
find on the net is for it diagnosing motor neurone disease, and I'm sure I
haven't got that.

Did/do any other List members, get slight loss of "ticklishness" on the sole
of the affected foot, in early pd?  My reaction to the doctor's reflex test
on the sole, and my confirmation that I'd had a bit of pins and needles in
the fingers, made him suspect ms, but I think he's wrong.  It's too much
like pd.

I found a really good article at
  that mentions
paresthesias (abnormal sensations) as a symptom.  That might interest a
member who wrote in last week asking about pins and needles - I didn't keep
their email.  The article was published in a medical journal and has very
detailed descriptions of lots of symptoms, as well as info on pd's course,
and diseases with which it can be confused. It says sensation is usually
well retained, though.

Has anyone any comments?

Thanks for your support,
Susan.

* * *

Hi Susan,

I first went to a neurologist at age 38 with loss of sensation (numbness) and 
pins and needles (tingling) and the
distinct sensation that I could lose my balance at any time... (I was working 
on open steel construction at the time)

I was given an MRI and a CT scan and many other observations and tests related 
to MS and nothing was definite.

The neuro gave me a very tentative diagnosis of early stage MS and I did a lot 
of step exercises and balance
exercises... (I got down off the I-Beams and went in the office as a Supervisor)

At age 41 I decided I did not have MS... (I had read everything the library 
had... this was pre-internet...)

I later found out that this neuro was not an MS specialist, nor a Movement 
Disorder Specialist, and quite likely had
little or no direct knowledge or exposure to Early Onset Parkinson's patients...

My suggestion... Find a Movement Disorder Center near you and pay them a 
visit...

I was finally correctly diagnosed with Parkinson's nearly 10 years later... 
(Internet in it's infancy, pre MJF,
Parkinson's was still a "foreign" word to me...)

I discovered I lived practically next door (less than 30 minutes away) to a 
world class Parkinson's Research and
Movement Disorder Center at UBC here in Vancouver...

I went there for a second opinion (confirmed Parkinson's in minutes) and have 
been going there ever since...

Now, knowing Parkinson's first hand, with recognition that Parkinson's can 
start in the young, (MJF again...) and with
active participation on the Internet, both through a web site and through 
forums, I feel I cannot over stress how
essential good neuros and a Movement Disorder Team really are both in diagnosis 
and subsequent therapy...

Speaking of Michael J. Fox, he has raised awareness, and made Parkinson's a 
household word virtually single handed,
firstly because he is a celebrity, secondly because of his generous public 
exposure, (TV, media, Lucky Man) and then
through his MJFF Research funding efforts has made people generally aware that 
there are research centers...

check out this page on my web site...

Parkinson's & Your Health Care Team


Offa my soap box...

cheers ...... murray

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