-----Original Message-----
From: Diane Mayer <mongoe(AT)sympatico.ca>
To: tmic-list(AT)eskimo.com <tmic-list(AT)eskimo.com>
Date: Saturday, 22 May 1999 9:44:am
Subject: [TMIC] new patient
>I am 57 years old. In Jan 99, my husband & I came down with a flu
>virus. He was diagnosed with double pneumonia. A few days later when he
>started to feel better with antibiotics, I started the same symptoms -
>constant fever bouts of 103-104 and general unwell feeling. After a
>week, I saw my family doctor who found nothing but symptoms of a virus.
>By the 2nd week, on the week-end,I feltl so ill, I went to hospital
>emergency. The doctor I saw there was very thorough but could find
>nothing but flu symptoms. In the 3rd week and still with very high
>fevers, my bladder started to shut down. Back to family doctor. He sent
>me to hospital emergency with a requisition for a catheter-leg bag. I
>was to see a urologist in few days.
>
>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