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Subject:
From:
Jennifer Zubko <[log in to unmask]>
Reply To:
St. John's University Cerebral Palsy List
Date:
Sat, 9 Feb 2002 16:54:52 EST
Content-Type:
text/plain
Parts/Attachments:
text/plain (41 lines)
Hi Everyone,

First, my apologies to anyone who gets two of these because they bellong
to more than one Internet support group, but I need to vent.

I am still at home for medical testing. Yesterday, (February 8th), I went
for an E.M.G. (The one which Dr. Strong (neurologist), had initially said
he did NOT order). He really DID order the test. I get into the
examination room, and the technician says that the requisition states that
the physician ordered an EMG study of my right hand and arm. I WAS
SHOCKED. THIS IS MY LEAST AFFECTED BODY PART. I snt the technologist to
find Dr. Strong, and it turns out that he wants an EMG study of my legs--
makes much more sense to me. The test was a needle study, so somewhat
painful, but I got through it alright. No specific nerve damage anywhere,
although there are some muscles in my legs which I will never be able to
strengthen, because they have very little innervation...

Now on to my second need for venting. I had telephoned Dr. Strong's office
on Tuesday regarding oral medications I might take for dystonia. All of
the movement keeps me awake at night, disturbs my sitting balance, etc.
Yesterday, I ran into the nurse, and she said she would get him to
prescribe me something, asked the phone number of our regular pharmacy,
etc. I got a phone call from the nurse around 7 last night saying that Dr.
Strong could not find the notes mentioning these meds, that his secretary
still had to do a lot of filing, and that it might take a WEEK for them to
call anything into the pharmacy. I am in pain and cannot wait a week!!!!
So instead of freaking, I did the most humane thing and looked up
medications for dystonia on the Internet and left a message for the nurse
with the names that I thought were mentioned. I hope they will do
something for me soon. I am sleeping 12-16 hours a day, just because I
must take so much medication I HAVE NO LIFE. They will not tell me when
they will do the surgery for  Intrathecal Baclofen pump placement, just
that I will be called a week to a month ahead, and that it will PROBABLY
BE IN MAY I am going nuts, just want someone to listen to me, want to be a
student instead of living in my bed. I want to cry as I  write this.
Sorry, but I needed to vent. Please say some prayers for me.

Jenn
(who wishes she could get new physicians but cannot thanks to the slow
Canadian system).

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