Jeanne, I wish I had known about this group from the beginning also. That isolated, nobody else has this, feeling is the pits! I think it just gets down to "the doctors just don't know much about this disease" and since it is so rare and they rarely run into it, I think they just don't want to mess with it. My doctors were very kind to me, so this is not coming from bitterness. Just being realistic. Anyway, that is my opinion. Janice ----- Original Message ----- From: jrushton To: Grace M. ; tmic Sent: Thursday, April 23, 2009 7:05 PM Subject: [TMIC] Mayo Clinic/Johns Hopkins
Gosh, how I wished I had been part of tmic long enough to have had all
of this advice before Jack and I took that long, expensive trip to Johns
Hopkins to be seen by a specialist there. I wanted to see Dr. Kerr but they
put me with another neurologist that was okay and did a pretty thorough exam
but it even could have been better. He had me walk about three feet in the
tiny exam room right beside the bed which is not anywhere long enough for those
of us who 'walk' in order to really see how we do it! Plus he took down the
info on the meds I was taking, hardly said a word, yet in his chart notes (that
I received a copy of) he said he 'discussed with me at great length about my
taking too much Ibuprofen and Tylenol, etc.' which was absolutely NOT TRUE and
had been totally approved by my regular provider!! We sat there in silence so
much of our visit and I was wanting him to ask me questions, talk to me, do
something. Guess what his diagnosis was??? You got it! Transverse Myelitis!
I was just devastated. I went to another neuro prior to that and he did the
same sort of tests and gave me the same diagnosis. This was all after I had
been originally diagnosed in ICU at Harborview Hospital where I was flown upon
the original onset. I sure wished I had had you all the first couple years.
It was scary, lonely, and I sure needed you!!! Now, I would do things much
differently because of all I know, all I have learned from you all, and I was
sassy before....now, I'm REALLY sassy!!! Jeanne in Dayton
-------Original Message-------
From: Grace M.
Date: 4/23/2009 2:49:27 PM
To: Sandy Heidel
Cc: tmic-list@eskimo.com
Subject: Re: [TMIC] Mayo Clinic
Hi Sandy,
If you've had the privilege of being seen by Dr. Brian Weinshenker,
you've been seen by the best. He's amazing. Not only is he a top notch
researcher, but he's a compassionate clinician as well.
Hugs,
Gracie
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