Jenn,

Sure sounds to me as if there have been huge communication gaps all along the line.  Why send the outside agency the diagnosis and not you?  I surely don't understand that.  And why the pension plan? (unless it's a Canadian version of our Social Security Disability plan). Frankly I think you should have heard the news from your doctor, not your therapist or nurse.

Which type of dystonia are they talking about? If it's tardive dystonia, your entire drug treatment needs to be reevaluated.  This is all so muddled, no wonder you're mad.

Kat
"St. John's University Cerebral Palsy List" <[log in to unmask]> wrote:
> 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"
To:
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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