Hi, Diane! The first doctor I saw was in Harborview in Seattle after being
flown there by Medvac. He spent days conferring with other neurologists,
running every imaginable blood test, brain scans, and MRI's which is where
he found the T4 damage to the front part of my spinal cord. He still didn't
know what caused it after all of the tests. He just kept ruling everything
out, including Lupus and MS. After a few days he finally said he just didn
t know but he was pretty sure it was Transverse Myelitis and he must have
looked it up on the computer because when I got home his description was
almost verbatim to what I read.
Going to Harborvew was after having spent an entire day (I was in the first
ER by 9AM) of being in two ER's where I was just left laying in extreme pain
and they thought it was just a pinched nerve even tho by noon I was entirely
paralyzed from the chest down. They finally gave me something for the pain.
My daughter asked me if I needed to use the bathroom and I told her I just
didn't know so she went to one of the nurses who finally cathed me! This
was about 3-4PM. An entire day of no one knowing what to do with me! They,
too, had done XR's, MRI's at two different hospitals finding nothing and
found nothing. The doctor at Harborview said he couldn't even read their
MRI's so he did his own and immediately saw the damage. Such a nightmare of
a day!
One ER wouldn't even let me in so I had to stay out in the ambulance for 45
minutes in horrible pain. Their reason? The ER doctor where I started
wouldn't release" me so they couldn't let me in until he did! He wanted me
to return which was almost an hour away! I had two of the best insurances
you could have so that wasn't it. What a horrible nightmare that day was!
They finally brought me in and for about seven hours just let me lay there
because they didn't know what to do. My husband finally insisted they fly
me to Seattle so they agreed and off I went about 1AM and about 5 or 6
neurologists met me at the ER door and after asking me if I had a Living
Will and would I like to see a minister or priest, rushed me off and started
me on high doses of steroids to stop the inflammation. For several months I
was paralyzed from the chest down and the only thing that has helped is
constant PT. I do water therapy and my husband and I are making a walking
path so I can start walking, also. If I quit, I'm done. I know I'll end up
on my back. My walk is like a drunk but, by gosh!! I can walk!
Sorry for the yakyakyak but it kind of gives you an idea of what 'we' all
have probably run into in one way or another?
Hope a little of this helps in some way!
Jeanne in Dayton, WA where we woke to snow and sunshine!
-------Original Message-------
From: Diane
Date: 3/20/2008 10:51:10 PM
To: Jan Hargrove; [EMAIL PROTECTED]; tmic-list
Subject: Re: [TMIC] Sweating
I'm so glad someone started this conversation. Nobody (doctors) has
explained to me why these symptoms appear except to say that no, I don't
have Lupus etc. I get a fever before the sweating and the only place I
sweat is the back of my head. It just pours and I have to put a towel
around my neck. The only place I have the freeze burning is a patch between
my shoulder blades.
I don't post very often so I should tell you I'm 9 yrs into TM and 'possible
MS. I can walk unassisted about 30 ft. I have a cane and have been using
a walker more and more in the last 2 yrs. Saw my neuro last week & he's not
happy with the downhill status so he's sending me for some rehab work. The
backsliding has been gradual so he doesn't think we're looking at MS. My
last MRI showed no change.
Diane in Canada
----- Original Message -----
From: Jan Hargrove
To: [EMAIL PROTECTED] ; tmic-list
Sent: Thursday, March 20, 2008 10:58 PM
Subject: Re: [TMIC] Sweating
Cheryl,
My neurogolist told me that the only thing that wouldn't return is my
temperature con-
trol.... He was correct..............I sweat from my breasts up.....I was
paralyzed at the t-8, I was a complete........I freeze in the winter, cause
I also have the freeze burning in my legs, 24/7........and in the summer, I
have to watch and not stay out in the heat very long cause I could have a
heat stroke...I "sweat" profusely!!.
Maybe this help with your question......janh
"[EMAIL PROTECTED]" <[EMAIL PROTECTED]> wrote:
Hi,
I am affected a the T4-T5 level also,but I don't sweat on one side of
my face since getting tm. I also only blush on one side. No one has ever
been able to explain it.
Cheryl in cold,cloudy Easthampton,Mass.
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