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.

I'm 19, taking classes from Harcourt. I live in Pennsylvania, just outside of Philadelphia. I'm a computer science major. All of my life (well, 12 years) since I had my first episode... I've always wanted to make people aware of TM. And I would do anything to help someone else. And I mean ANYTHING. I'm one of the luckier ones with TM. I can walk, see, and do really anything. But I have my share of problems.

It all began in February of 1989; I was seven years old. I remember this as though it was yesterday. I had a horrible flu. The worst flu I had ever had. I was sleeping on the sofa because I wanted be to closer to my mom's room. I woke up early in the morning, and I had to go to the bathroom. I tried to get up and walk but I couldn't. Step after step I kept falling. I tried to climb my way up the stairs to where the bathroom was. And when I got to the top of the stairs I just sat there and cried. I had lost control of my bladder. I was hysterical. My stepfather came out of the bathroom and didn't know what to do. By this time everyone in the house was awake. I couldn't walk, see, or control my bladder. This was sooooo scary.

I went to Phoenixville Hospital and they looked at me for a little and then didn't know what to do, so they sent me home. I didn't know what was going on. Then I was still unable to walk for the next couple of days, so my mom and dad decided I needed help. I was taken to Children's Hospital in Philadelphia. While I was there, I had to get test after test. MRI's, spinal taps, blood, breathing, and many more.... It felt like I was just a test patient. I was scared when the doctors could not diagnose my illness. First, they said it was lyme disease and then they said it wasn't. I showed lesions on my spine and brain. After all these tests, the hospital said that I was the first child in the United States to have these symptoms. So, they didn't know what to diagnose me with except they called it a "form of MS." This didn't make my mom happy at all. We wanted to know what was going on.

Then I feel as though a miracle happened. I gradually was able to walk again. And I got my vision back. I was sent home. I had to get physical therapy so that I could walk again. Well, as the years went on.... I was pretty much an active kid. But something still happens to me. I have these things that the doctor calls relapses. I go paralyzed for maybe a day to a few days at a time. My step-mom called these episodes "attention attacks." That hurts a lot. But it seems to happen when I'm under stress more then ever. And I usually end up back in the hospital. The hardest part for me is that I feel all alone when this happens. The doctors never know what to do.

When I was in middle school and high school I was very athletic. But I would have my good days and bad days. Some nights I would lay in my bed and cry and hope that tomorrow I would be able to walk and see. I was an all-star field hockey player and captain of my team for three years. I am grateful of this. The doctors once told me I would never walk again and now I disproved them. I never came out and talked about this before because I felt that I was alone. The first time that anyone knew about this was my senior year of high school. I made a speech at a sports banquet and told everyone. They were shocked. I felt a lot stronger after I talked about it. I let many years go by before I went back to the neurologist, because I had to always go alone and I was scared. When I went back last November, the neurologist then diagnosed me with Transverse Myelitis. For me it took them 11 years to tell me what I had.

How I stand now, I am working full time with computers. I'm taking classes. I live with my grandmom. My parents have been divorced since I was five, so that is a frustrating situation till this day. I have problems to this day with my back, legs, eyes, and bladder control. It effected T5 down. Some days my legs feel so weak to do anything. Other days I can run forever. My bladder will never be better. I want to get this looked at but it takes me going back to my doctor and then another. I get sick of it. But I do what I have to. I never know exactly what to do, because I haven't had any guidance. I've been on my own. I'm willing to go out and help out anyone who needs someone to talk to. It's so good to know that I'm not alone in the world. Also one last thing, sometimes I get so depressed. I just cry and cry. Well, this is my story... in a short version. Sometimes I just really need someone to talk to. If anyone is willing to talk or email me please feel free to do so. I will do anything to get the word out about TM. Thank you for taking the time to read this.
                                    
I thought that I just had the flu
but I got so sick
I didn't know what to do
I woke up in the middle of the night
I was so scared and full of fright
When I tried to walk I just kept falling
Then all I knew,
my mom I was calling
When I tried to look I couldn't see
all I kept saying was this couldn't be.
My legs were numb from my chest down
all I wanted to do was just sit there and frown
Many doctors and hospitals I went to
but none of them knew what to do
I went through test after test
but I still had that aching in my chest
I never knew why I couldn't hold my bladder, walk or see
all I knew was at home is where I definitely wanted to be.
 
After a long time of probing, MRI's, blood, spinal taps,
they sent me home
with out a diagnosis!!!!

Then I got better and could walk
and see
But the sad thing is
I'm not the old me.
I still have the problems from my chest down
and some days I'm so depressed
I just frown
but for the past 12 years
I've grown emotionally strong
even knowing that some things are still wrong.
I want to help out others like me,
I want to open their eyes
and let them see.
 
I know I'll never be back to 100%
but with the love and support that is all I need!!!!!
                                ~Kelly

Faye Mansfield
Dresden Tennessee

My name is Faye Mansfield. I had always been told at age 50 everything goes down hill. In my mind, I was not going to feel that way. I was a happy, divorced, slim, outgoing, good shape, loving lady. I was having a great time. I had met a man who I was enjoying spending all of my extra time with. I thought I had been through enough hurt and heartache. Already I had lost my two children in two different car wrecks at different times and had lost my father to whom I was very close. I was ready to enjoy life and not let life get me down.

In February, I was working at a medical clinic. I had worked there ten years ago. I loved the work there and wanted to fill in for a girl who was off to have a baby. This would have been through the winter cold and flu season. I went to work and I took a sinus infection, then cold and pneumonia. It was four weeks of seeing the doctor and trying to work and off a few days and then back to work. So I thought I was over all my sickness. The six weeks of working for the girl who had the baby was over. Thought I had gotten well by now, ready to get on with life. It was time for my yearly check up with my doctor, the one I had worked for ten years. He was also a great friend. It was May 5, 1997; he checked me and I felt great except my ankles had felt a little weak. I told the doctor this and he told me, you know how sick you were when you were working over here a couple of months ago, you may not have gotten over it completely. He gave me some antibiotics. So, I got them filled and took one that night. The next morning, May 6, 1997, I woke up and could hardly walk to my bathroom, which was only about ten feet away. I didn't know what was going on. After going to the bathroom, I always went straight to the kitchen to make coffee. It was just as hard to get to the kitchen that morning. I made my coffee and sat down and tried to figure out what was going on. Just after going to the doctor the day before; I was at a total loss to know what was wrong.

It was about 6:30 AM. I had never called the doctor at home. After working with him, I knew if he had been up all night, he would not be happy at all with me. After about ten minutes, I called anyway. He was so sweet. He said he didn't know what was wrong but that something was because he had checked me over really well the day before. He told me to sit there and call someone to come and carry me to the Neurology Semmes Murphy Clinic in Jackson, which is an hour and a half away. Here I was, hair not combed, no make-up, scared to death. A dear friend of mine, Cathy, came to carry me to Jackson to see the doctor.

She got me to her car with great difficulty. The doctor saw me soon after I got to his office; not saying very much to me while I was being checked. After being around a clinic working for ten years, in my mind, I felt something was very wrong. I was then sent to the hospital for many more tests. Within a few hours, I could not move from midway of my rib cage down. While in the hospital, I was given three bags of steroids. I had a MRI two days in a row, blood work of all kinds, spinal tap, and tested for MS.

Dr. Misulls had told me he thought it was Transverse Myelitis. I had no idea what that was. By this time, my eyes were not clear at all. My right eye was much worse than the left, but my left side was much weaker. My bladder had become very weak at this time. I thought it was all caused from me having to pull myself up in the hospital bed and trying to stand. It is now working fine and I have to watch my diet and sometimes take something for constipation. As for my learning to walk again, the paralysis, numbness, tingling, burning, and freezing sensations were terrible along with trying to wear shoes on my feet. I would sit with ice packs on my feet. I had told my therapist I wanted to be walking in three weeks. He said, OK, if that is what you want to do. I had no idea that walking in three weeks was not going to happen. First of all, I could not even turn over in bed. He worked with me three times a week and was very good.

After about three months, I was standing up with a walker. I was fighting very hard to get back in the world that I had been taken out of by TM. I still wanted to enjoy the man that was standing by my side and all my friends and the great mother and sister I have. They were all there everyday for me. I was getting out of that wheelchair and off that walker no matter what they said. My friend Cathy would try to keep me looking up, pushing me in the wheelchair like it was a machine made to fly. With her behind you, there was no way you would not laugh even if I had fallen out. I told her I needed a seat belt when she was pushing me. By the last of August, I was walking a little with help. My eyes were still a large disadvantage to me. I had gone totally blind in my right eye for about three days, but it was coming back very slowly. I only saw black, gray, and white for several months. Then I saw blue dots on everything for weeks. My eyes were changing and this just about drove me crazy. Now my left eye has good color and in the right eye, I am color blind. With both eyes open, the left eye rules. In letters from the TM friends, I didn't see anything about eyes. My left eye is pretty good but my right eye is considered legally blind. But, thank God, he gave me back part of what I lost, and he is the only one who can help from now on. Once the optic nerve is damaged, there is nothing anyone can do. But God can, if it is his will to and I pray that it is.

Yes, I still have a lot of nerve damage in my feet, legs and ribcage all the way around and down. No matter how bad it is, I am working and my eyes are pretty good. If the lighting is right for me, I see OK. My eyes won't filter out the bright light.

Yes, I married the man that stood by me and I love him very much. My family and friends are very special to me. I feel much pain but try hard to not talk and dwell on it. I was sent to the Vitrcoretinal Foundation in Memphis, Tennessee after seeing my local eye doctor, Dr. Robert Jordon, whom I have a lot of trust in. I was also sent to Vanderbilt Hospital in Nashville to make sure I didn't have MS. The doctor said that I did not. When I was sent to Vanderbilt, the MRI that was taken when I first got sick showed T5 had swelling and a small spot in the ponds.

I want to thank all my doctors for trying to help me. Most of all, Dr. OK Smith who is a friend and doctor. It meant a lot to me when he took time out to call even when he didn't have to. I still have hope I will get better. It is up to someone greater than I.

Your TM Friend,
Faye Mansfield