Hi there Joanne,

It was actually the  THERAPIST who saw me who kept mentioning I had
dystonia, as well as the nurse, just not the doctor. If dystonia is the
cause of my pain (which it very well might be), I have many of the symptoms,
they should have used a starting dose of at least 250 mcg given through a an
external pump implanted in the operating room. Everything is flawed. Thats
why I WANT A NEW TRIAL DONE.  I would be more accepting if my nerves were
not hit, if things happened under the same conditions, etc. But they told me
to take my drugs. And I was in so much pain from my nerve being hit after
all the anaesthetic wore off I took the morphine. The second day (genuine
drug day), I could feel the medication go to my head and knew why from
internet reading.... Its just everything was messed up. If everything had
played out under the same conditions, I would be able to truly say this was
not something for me... The thing is, I just  do not think I  can say that
yet. I am glad you understand now that I am not just being whiney.

Jenn

PS The therapist also readily admitted during testing that they would not
see change in dystonia with the lumbar puncture... Then I get this letter to
out outside agency-- my pension actually. That is why I am so upset. And it
was the outside agency who gave me a copy of the doctor's letter, not the
doctor himself.
To get a copy of my medical records costs me 50 cents a page. Money I don't
have. And I DON'T THINK I WANT TO WORK W/ THESE PEOPLE ANYWAY.
----- Original Message -----
From: "jd" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Monday, March 18, 2002 1:26 AM
Subject: Re: Kat- Why I WANT 2ND ITB TRIAL


> Jenn,
> There are a couple of things that I am finally being
> to understand in this battle of yours. I am really
> hoping the pain clinic is the answer for your relief.
> I also hope you don't have to give up function in
> order to get that relief.
> As far as the ITB tial went it seems awfully flawed to
> me. I didn't realize that you had the 1st and 2nd
> trial under different conditions. The first you went
> in narcotic free from several days prior to the test
> and the second you were taking drugs right up till the
> injections. It would be really hard to make any sort
> of clinical judgments under those conditions.
>  I also didn't  know that they didn't tell you to your
> face that you had dystonia but that you found out in a
> copy of a letter that was sent to the doctor for the
> pump to treat dystonia.
> I have copies of all of ALex's appointments as well as
> doctors letters etc. I can't begin to tell you how
> many times incorrect info was typed into those
> letters. Heck they even listed wrong surgeries and as
> well as one that was never performed. I watch for
> insurance purposes but really is amazing how many
> mistakes can be made by the transcriptionist or as the
> doctor is  reviewing the days cases and making notes
> for transcription he has your file in front of him and
> he see's your name and thinks of another female
> patient he saw that day who does have dystonia and
> dictates her notes to your file. It seems kind of
> weird that no-one mentions dystonia all your life
> until now. I also know that some drugs can have an
> effect called  Tardive Dyskinesia which is basically
> drug induced dystonia. The most common drugs are used
> for psychiatric patients( not that I think ouare
> pyschotic but other drugs can have the TD as a side
> effect as well. Bobby, I think this is up your ally
> isn't it.
> Here is a sight to check out and has a list  of common
> drugs that can bring TD on( list 1). I really hope
> your answer comes soon.
>
>
> http://www.emedicine.com/neuro/topic362.htm
>
>
> Joanne
>
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