TMA Newsletter, Vol 5, Issue 1

Transverse Myelitis Association
Volume 5 Issue 1
December 2002
Page 27

In Their Own Words

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.

Denice Stohr
Livermore CA

I was diagnosed with TM in January 2001. I was up on Mount Hamilton, playing in the snow with my grandchildren. We were having a wonderful family outing. Very seldom do I have the opportunity to see all of our grandchildren at once and we took advantage of our day together. I have gotten herpes cold sores since I was a child and didn't think much of getting an outbreak. I took my meds, as usual, and went on with the day. This time it was different. After the initial breakout was over, I got a new, more sever out brake the next day. This had never happened before in 38 years.

The next day when I woke up I could not move. I thought it was due to the fact that I am not usually in the snow and since I have scoliosis, my back was just giving me fits. It continued through the day and I became concerned. I went to the emergency room and they had no idea what the problem was. I had no reflexes in my arms, legs or feet. I had no pulse in my wrists or feet. They did an MRI and spinal tap. Their conclusion was that they had no idea and I should see my primary care physician the next day. I was worried about leaving the hospital since I still could not move.

I went to see Margaret, my nurse practitioner. She told me that I had an appointment with a neurologist later that day. Since I had not made the appointment and she had not made the appointment, we were both at a loss as to who did. I started to become really worried about what was happening. My dad took me to my appointment later that day. I met the neurologist. He told me that I would have to stay in the hospital so they could do a few tests on me. I will tell you at this time that I HATE hospitals. In the hospital I was poked, shocked, stuck, x-rayed, and prodded. I felt like a human pin cushion! I was released from the hospital after four days. Before leaving I was told that I had some strange thing called Transverse Myelitis. They had no idea how I got it, how long it would last or what it was. I was instructed to return to the neurologist in two weeks.

When I got home, my husband and son brought the extra twin bed downstairs and I tried to get around as best I could. If it were not for my friends and family, I don't think I would be here. Those were the longest two weeks of my life! I went to see the neurologist and was told that my condition was permanent. I could not believe the words that were coming out of his mouth. In fact, he had to repeat them three times! My mind was reeling! I would never walk again? I would never be able to be a clown again (that was my profession)? I would never be able to drive? All this was happening too fast! I could not fathom that my life had changed so much so fast! I was wheeled out into the waiting room where I saw my dad. He casually asked how it went and I lost it! I was inconsolable! In the days and months since then I have endured 12 spinal taps in one day, that didn't close and I had to receive 'blood patches,’ 23 MRI's, 16 CAT scans and various other attacks on my body.

I am now able to walk with braces and a walker. Due to the meds I take, I have very little memory. I have broken just about every dish in the house, because my brain will forget to tell my hand that I am holding something. I have incontinence trouble, and am in constant pain. I can not feel my feet or most of my hands. I was given anti-depressant drugs for the pain, which do nothing to stop it. I am taking 3600 mg. of a drug called Neurontin. I wish I knew how to get the doctors to listen to me! If they can grow an ear on the back of a mouse, I can't understand why they can't come up with some way to stop the pain!

I have been very touched by the other letters I have read in the newsletter. You all have made this unwanted journey a little less frightening by sharing your stories and I want you to know I appreciate your words. My heart goes out to those of you who have not, as of yet, made the progress you have desired. Keep trying! Don't give up! I am pulling for you! You are always in my thoughts and prayers!

Your friend!
Denice Stohr
nieceepoo[AT SIGN]earthlink.net

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