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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