In each issue of the newsletter, we will bring you a column that presents the experiences of our members. Their stories are presented In Their Own Words by way of letters they have sent us. We are most appreciative of their willingness to share their very personal stories. It is our hope that through the sharing of these experiences, we will all learn something about each other and about ourselves. It is our hope that the stories will help us all realize that we are not alone. You may submit your stories by sending them either by e-mail or through the postal service to Sandy Siegel.

Hi, my name is Phyllis and I live in Sutton, Ontario, Canada. I am 54 years old and I have been diagnosed with TM.

On June 23, 2000 my husband and I had gone out to dinner. When we returned, I was drinking a cup of tea and watching the ball game on TV when my fingers on my right hand started to tingle (that falling asleep feeling). Within half an hour, the tingling and now numbness was moving up my right arm to shoulder level. It then started in my left hand and traveled up my left arm to shoulder level. Within two hours I couldn't move my arms and my husband helped me into my pajamas. I had a nagging pain in my shoulders and arms and they felt like lead. I couldn't get comfortable in bed, on the couch or on the floor that night. I don't think I slept at all.

Saturday morning I got to see my doctor who immediately sent me to the ER at the nearest hospital about 25 miles away. Because I had a fall the day before down three cement steps landing on my butt, the ER doctor ordered a CAT scan and x-rays of my spine, but they showed nothing unusual. As it was Saturday and no MRIs are done at this hospital, I was sent by ambulance to St. Michael's hospital in Toronto to see a neurosurgeon in the ER there. I had my first MRI on my spine at 8:00 p.m. that night and by midnight I was told by the neurosurgeon (who had been in surgery) that I didn't need his services as there were no fractures in my spine. He said that a neurologist would see me Sunday morning in the hospital. I was admitted to the hospital.

Things were a little fuzzy for the next few days as numerous tests were done, including blood tests, a MRI on my head which was normal, evoked potentials which were normal, and a lumbar puncture which revealed oligoclonal banding. The MRI on my spine showed a lesion starting at C2 to C5. In the hospital I was put on an I.V. drip of Solumedrol for four days. Because my arms didn't work, I was completely helpless except I could walk the corridors. I even had to be fed my meals and have my teeth brushed. I think I heard the terms multiple sclerosis and transverse myelitis while I was in the hospital.

I was asked if I would give the history of what had happened to the whole neurology department in the hospital, because my case was so unusual. When I did, they asked me all sorts of questions, but I received no direct answers as to what was wrong with me. Shortly after the meeting, I was discharged from the hospital. I was glad to be on my way home, although I had not been given a diagnosis. I was just told I was very unusual. I was given a two-week taper of prednisone to be taken at home.

I have since had another MRI on August 9, 2000, which showed the swelling had narrowed a bit. On November 10, 2000 I had an EMG and the doctor who performed it didn't think I had MS. She said the nerves in my shoulders were regenerating, but that it was a slow process that could continue for about two years. I am scheduled for another MRI on May 22, 2001.

I had been employed as a legal secretary for 17 ½ years for the same lawyer. I haven't been able to work since June 23, 2000, as I can't use the computer for any length of time. My boss has been very supportive and has told me I still have a job, if I can ever come back. My neurologist has told me he doubts I'll ever be able to work again.

I have a wonderful husband, Brian, who has pitched in and does most everything at home. Thank goodness he likes to cook. Preparation of all meals, cleaning the house, showering, dressing and feeding me fell on him, as well as his continuing to work a four day work week and doing all the yard work at our home. We have two grown children, a daughter 28 who lives in Colorado and a son 26 who lives in Texas. My sister-in-law, Lillian, was a godsend in those first weeks last summer, as she would come each morning to see if I needed anything while Brian was working. There is a therapeutic pool not far from where I live that Lillian started taking me to about a week after I was out of the hospital. It is great as a person can do many more exercises in the water due to the buoyancy.

By November my husband had cut back his work week to two days and he started taking the pool classes with me. I go three times a week. I also do arm exercises on my own at home and I walk a lot, but not in the snowy winter. I walk 2 ½ miles, three or four times a week.

From time to time I do get a banding feeling across my rib area on my left side. My upper front legs sometimes feel cold from the inside out, but are not cold to touch. My knees sometimes have a throbbing feeling. I don't know if that is TM or age. I had no paralysis in my legs. My worst symptoms are still the numbness and tingling in my hands and lower arms. I am unable to lift objects more than a pound and not very high. I take no medications. It is hard to get comfortable in bed, because no matter where I lay, that part of my arm falls asleep very easily.

I have not driven a car since June 23, 2000 and I may never be able to again. I live about five miles from the nearest town. I do like to read a lot, do jigsaw puzzles and crossword puzzles. Prior to contracting TM, I did knit and sew, but not anymore so far.

From what I have read on TM on the Internet, I think I am very lucky. However, I haven't been able to find many other people with similar symptoms to mine where the paralysis hit my arms and not my legs. I would be interested in hearing from anyone who has similar symptoms.

Phyllis Pollock
76 Virginia Blvd., R.R. 2
Sutton, ON
Canada L0E 1R0
phyllis.pollock[AT SIGN]sympatico.ca