By the time I arrived for my appointment with the urologist, I was
barely walking. I hadn't eaten in 3 weeks and assumed this was the
reason. The urologist asked a couple of questions and ran down to see
my family doctor in the same building. They conferred and I was
admitted to hosp. for possible Guillain-Barre. My case was referred to
a neurologist who examined me and put me on Cortisone (adm
intraveneously) for 8 days. I had a CAT-scan, 2 MRIs (head & spine),
x-rays, blood tests, a spinal tap and another test (name?) where
electrical impulses are sent to legs & feet. I had little feeling from
the waist down and could barely stand. I was in the hospital for 10
days but by the time I was sent home, I could walk a bit with a walker.
I used the walker for the next 2 months. I am now walking with no help
but only for short periods. Sometimes there is pain but it is not
unbearable. There are still times when my knees buckle or I lose my
balance. There is no feeling in 2 toes of each foot.
The only spasms I get are abdominal & changing position usually stops
them. Strange sensory sensations in my arms & torso are almost gone. It
used to feel like I was washing someone else's arms & torso. The awful
tastes and smells only come periodically now. Grain products were the
worst.
I finally got my diagnosis of TM in March. The neurologist seems to have
adopted a wait & see attitude. There has been a lot of progress and from
reading the letters here, I guess I have been very lucky. I still
self-catheterize but I am so thankful my bowels started working almost
normally after I discovered chocolate (great for the hips). About 4
ounces every 3 days or so and things just happen! My biggest complaint
is how quickly I tire. Life has changed tremendously because I cannot
plan tomorrow. There are times when I can go for groceries with hubby
and am fine for about an hour (max.) Other times, walking to the
kitchen wipes me out. It feels like an elephant suddenly sits on my
shoulders and I have to get back to bed. My husband has had to take over
the cooking & housework. Fortunately we had both taken early retirement
last year.
Maybe somebody out there is experiencing the following:- At the
beginning of all this, there was an icy cold sensation from my waist
down. Six weeks later, the "ice pack" had moved to between my shoulder
blades. Sometimes it moves to the base of my neck. Strange prickling
sensations occur in my arms/hands or one side of my head (cheek & tongue
as well) depending where the "ice pack" is. If I get tired, the cold
intensifies and a feeling of utter exhaustion comes over me. Then, like
a switch has been touched, I start sweating, mostly just the back of my
head. I just spent 2 weeks with towels around my neck to catch the
sweat. The bouts lasted anywhere from 5 min to 6 hours with little time
in between. I asked my family doctor and he says it's just part of the
"process". I see the neurologist in a month and would like to ask him
the right questions. Anybody out there have that "ice pack" and
sweating?
Diane e-mail is mongoe(AT)sympatico.ca