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.

My Experience with Transverse Myelitis
June 17th 2001

At the age of 27, living by myself with two children (seven and nine), I have gone back to school to progress in life and I am really active. April 15th, 1991, afternoon, I feel pain in my lower back, numbness under my arms. I'm feeling very loud. Walking is hard, I can't write my name, and I don't have any strength. In the evening, I go to the emergency room, because the pain is still there. I saw a doctor who performs a radiological test (cervical spine). Result: nothing . He gave me a painkiller and put me to rest for ten days. I go back home, take my pills and go to bed. I didn't sleep well. In the morning, I try to get up to send my kids to school. Nothing moves. I don't have the choice; I have to go back to the hospital, but this time by ambulance. I have pain through all my body and I feel more and more weak. To the emergency room. They install me a catheter because I can't walk.

I see a neurologist. He performed a lumbar puncture and other radiological tests (cervical and back spine) to find what's happening to me. He gives me a room for the night. I have so much difficulties to breathe and nobody can hear me.

April 17th in the morning, my doctor gave me a test to know my oxygen level. After that, I go to the intensive care. He tells me that the nurses will be closer to me. Then I realize that it was something worse than I thought. Doctors don't know what I have. They think about Gillian Barre syndrome or multiple sclerosis. Afternoon, they put me on a ventilator. I can't breath by myself anymore. I receive blood plasma and nurses turn me every two hours. The pain is awful, even a little touch is terribly painful. I receive: netilmicine (anti-infectious), flagyl (antibiotic), zinacef, solumedrol (against inflammation). I pass an electromyography, a cervical and thorax scanner, a myelography, a nerve conduction test, and a neck soft tissue x-ray.

A few days later, doctors make their diagnosis: transverse myelitis, C2 C3. Nothing moving from my neck to my toes. The pain is like burning everywhere in my body. I'm on a ventilator from April 17th to May 25th. I had a stomach hemorrhage. I also had a tracheotomy from May 10th to October 11th. I had my catheter from April 16th to September 18th.

Since the beginning of my hospitalization, an occupational therapist and a physical therapist come see me everyday to help me move my arms and my legs to make my muscle react. A big thank you to those who take their time with me to help me get better. They support me really well.

On December 4th 1991, I took a nuclear magnetic resonance to confirm my diagnosis. On December 9th I left the hospital for a readaptation center. My first goal is to get an apartment and to take care of my kids. On June 17th 1992, I have reached my goal: I have an apartment and my daughter is living with me. I spent 14 months in the hospital. I miss my kids so much. My pain was worse than a regular pain, there was physical pain and the pain a mom can feel when she misses her kids.

One day, my doctor told me that I was so badly touched by the disease that it was a miracle that I could walk and move like this. The after effects that the transverse myelitis have caused:

My left side is still weak; my upper body is still atrophied; I have less sensation from my thoracic cage to my feet; I don't feel hot and cold in many places; I have a lazy bladder (it causes me many urinary infections); I need to use a laxative and suppositories to help my bowel move; when I have flu, I can't expectorate, so I've got to take antibiotic; I've got to take many rests in a day; I can walk for short distances (after 3 minutes, my legs get weak); I can't stand up and if I fall, I can't get up; and when I sit down, I need to put my legs up or they turn blue.

I still have pain. It feels like my body is burning inside. When I go down to sleep at night, I hope that tomorrow the pain will be gone, but I just have to move a little bit to feel it. Sometimes it's so painful that I have to change positions many times. I have tried lots of painkillers: tegretol, mexillecitin, neurontin, celebrex, vioxx and naproxen.

The sun's heat helps me a lot. I feel more supple and I can move more. Hot baths help me, too, but I can stay in too long because it makes me feel weak. Now I'm taking: baclofen (10mg x 3 times a day), detrol (2 mg x 2 a day) amitriptyline (75 mg 1 time a day), atasol (2 x 500mg each 4 hours), bisacodyl (10mg), bricanyl and pulmicort (when I have flu).

April 2001, I'm living with this disease for ten years now. I made my bereavement of what I was before. Now I'm rebuilding my life with what I am now. I understand after many years that the past is the past and I have to live with it. I thank with all my heart, all my family members who helped me for those 10 years. I thank also the men who take care of my kids from the first day; my friends who stay but I also understand those who leave because I know it's not easy to live with someone sick. Someone comes every week to do my cooking and my laundry.

My story ends here. Thank you for taking your time to read it and I hope it gives you some hope. Live one day at a time. I want to let people know that I'm open to receive questions and communication from people having this disease or from people living with those who have it in Quebec. Since I know the Association, I feel less alone and it helps me to continue.