Hi Diane, Natalie, et. al.,
I walk without an aid in the house (although I just had a bad fall in the
garage so maybe should be using a cane), a cane for walking short distances
where I don't have to stop for long and a walker for longer distances or times
when I may need to sit down.
My whole body is affected even though the MRI showed the inflammation to be at
the T12/L1 level. I've had a very difficult time trying to come to terms with
this because everything I read or heard tends to indicate that you should not
have problems above the site of the demyelination. After 20 months, I have
finally come to accept that this is not always the case.
I've had problems with my scalp being numb, my ears and face being cold as well
as feeling like I should be blowing icicles out of my mouth. I call it
numb/cold/burning/screaming skin!!! I was hit harder on the left side of my
body so the parts of my body on that side are colder than on the right side.
The feelings of tightness, cold, burning, numbness, etc., that I experience in
my legs is also in my torso and arms but to a lesser extent. If my symptoms
worsen in the lower half of my body, they will worsen correspondingly in the
upper body as well.
Some days I feel like I have a weird weakness in my spine that starts at the
very top and literally worms its way down to the bottom. When this happens,
there is a sickening weak feeling in my stomach and the rest of my insides -
not a very nice feeling.
The Neurologist indicated "the inflammatory response was diffuse and may have
injured multiple nerves that were not visualized on MRI.symptoms are consistent
with neuropathic pain."
The Neuro referred me to a Physiatrist (Dr. of Physiotherapy) and I have been
accepted as an outpatient at a spinal cord injury clinic in a hospital. They
call it the Specialized Outpatient Rehabilitation Services. I've only had two
visits: one assessment and another to put me through my paces!! The
physiotherapist is very positive and says there is room for slow improvement
but she did admit that dealing with the neuropathic pain is the tricky part.
Anyway, I am keeping my fingers crossed. I've regressed badly since last July.
My husband is very ill and our lives are upside down so all the good done by
the physiotherapy up to then has gradually gone by the wayside. I'm hoping
they can get me back on track.
I wish all of you the very best and keep up the good fight.
Regards.
Louise in Ontario Canada
----- Original Message -----
From: Diane
To: natalie mizenko ; Transverse Myellitis
Sent: Sunday, June 10, 2007 1:46 PM
Subject: Re: RE: [TMIC] ot
This interesting. Wonder how many of us are affected in multiple levels ???
TM hit me at L-1/L-2 and I was paralyzed from the waist down. I learned to
walk again for short distances 25-30 ft. with a cane or walker. However, I had
other symptoms above the waist and my neuro has confirmed that there are minute
lesions the whole length of my spine. None of these symptoms cause disability
- they're just annoying.
All in all, I am thankful TM was caught early before severe damage occurred.
Diane in Canada
----- Original Message -----
From: natalie mizenko
To: Transverse Myellitis
Sent: Sunday, June 10, 2007 10:32 AM
Subject: Re: RE: [TMIC] ot
Sally,
I was wondering what type of affect you have on your body in T6-T8?
Numbness, pain? Are you able to walk. I've always wondered when folks get TM
in 2 or 3 levels of the spine how it is. If you don't mind, I'm just trying to
educate myself on TM. I have it from T12 down and in a w/c. Did you have
Rehab in your state? I had to go from Arkansas to Texas for 7 weeks total.
Thanks, Natalie
"[EMAIL PROTECTED]" <[EMAIL PROTECTED]> wrote:
I live in Hawaii where it's usually in the 80's - or in cool weather,
in the 70's (I know, spoiled, aren't I!) The only weather that bothers me is
when it's cold - like when I went to California when it was in the 50's at
night. I wore 3 pair of socks and 2 pair of sweat pants to bed. Even in
Hawaii, I often wear socks around the house in the cool weather (we don't
normally wear shoes in the house here, but leaves our shoes at the door).
Sally (T6 - T8, 2005)
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