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.

On March 13, 2001 I noticed that my feet were numb and that the front of my thighs burned. I just figured that I had taken too hot of a shower. When my wife and I looked at my legs, the skin looked like it always did. It wasn't red or irritated. I began having trouble urinating. It would take forever to get it started and when it did start, it wouldn't go long enough to empty my bladder. The next day my legs had also gone to sleep. I could shuffle along, but I couldn't walk normally. I was in a lot of pain from not being able to urinate. My right arm was tingling and felt like it was going to sleep. My daughter drove me to the emergency room of our local hospital. I was looked at immediately by the staff doctor. He told me that he didn't know what I had, but whatever it was it was serious.

Several other doctors stopped by to poke and probe me. A doctor poked his head into my examination room and asked me if I had recently had the flu. I told him that my whole family had been sick about two weeks prior. My wife and grandson had gone to the doctor. I figured that I would get well on my own. Another doctor poked his head in and asked me if I had taken a flu shot. I said yes. The attending doctor came back in and asked me if I ever "imagined" being ill. He apologized for the question, but said he was required to ask it. To cut the doctor a little slack, I have been troubled with depression and obsessive compulsive disorder (checking things) and have taken 250 milligrams of elavil and 45 milligrams of buspar every day for the last 15 years. I hate to go to the doctor so being a hypochondriac is not my cup of tea. Another doctor came in and poked her finger up my behind to see if my prostate was keeping me from urinating. A catheter was installed on me.

After a couple of hours a neurologist arrived. He was concerned, because of my arm being involved, that it might be MS. I was admitted to the hospital and rolled down to the MRI machine to look at my upper spine. That evening the neurologist came to my room and said that the MRI picture didn't indicate MS, but he would need further tests before he would feel comfortable diagnosing my condition. He mentioned transverse myelitis.

Upon awaking the next morning, I found that my knees had lost all of their strength and my abdomen felt asleep from a couple of inches above my belly button down, but my arm felt normal. I knew that I had a butt, but it might as well have been someone else's. It was numb and I had no control of it. I would get the feeling I had to poop about ten seconds before it came out. A guy from physical therapy came and loaded me into a wheelchair and rolled me into a room full of exercise equipment. He lifted me up into a standing position and I took a stiff legged step or two (I felt like I was on wooden stilts), but I couldn't control my legs and feet. He had me hold onto a waist high horizontal bar and squat down. I had to pull myself up using my arms, as my knees had no strength. When I was in a sitting position, I couldn't even lift my legs an inch. I had never felt so helpless in my life.

Over the next couple of days, I had a MRI of the rest of my spine, as well as a spinal tap. My wife would help me out of my bed and I would slide stiff legged down the hall as she kept me from falling over. On the fourth day, my neurologist told me that the spinal tap had indicated inflammation in my spinal cord and diagnosed what I had as transverse myelitis. He said I could go home the next day provided that I could go to the bathroom without the catheter. When the catheter was removed, I managed to urinate on my own.

I went home the next morning armed with a prescription for Prednisone. I could shuffle from the family room sofa, with the help of a cane, to the bathroom and back a couple of times a day, but that was about it. When I would take a shower, I wasn't able to lift my legs high enough to put on my pants. It was after coming home that I felt a terrible tight "constriction band" running around my body just above my bellybutton. It was as though someone had put a belt around me and then pulled it five or six notches too tight. It was more aggravating than painful. The only position that minimized the band feeling was to lay on the sofa with my upper body propped up to a forty-five degree angle. At times, especially after eating, I felt as though I was being cut in two by the "band."

After two weeks of lying on the sofa, I began to feel something happening. It started at the top of my legs. It was as if I had a six-inch cuff day by day being slid down my legs. Six inches of my legs felt as though they were on fire. Any pressure or touching caused severe pain. The next day the pain would be gone, but that area would feel as though there was an electrical firefight going on in it. It was as though every nerve in that six-inch area was test firing and looking for what it should connect to. A day or two later that "cuff" of pain would move down. Over the period of a week, it moved all the way down my legs, firefight and all. But the day after the areas woke up, they would go back to sleep.

My first glimmer of hope came a week later when my ankles flushed warm. For lack of a better description, it felt as though that area was sweating. As each part of my legs and feet began to flush warm, I did what I could to exercise them. I might push my feet against the coffee table or hold onto a chair and try to do deep knee bends. I usually ended up pulling myself up with my arms as my knees were terribly weak. I could stand for awhile, but not long. My knees always felt weak.

From week eight through week ten my body would buzz from my constriction band down to my feet. It was as if I was hooked to an electrical power line. It didn't buzz all of the time, it would turn itself on and off. I would have my wife feel my legs to see if they were vibrating on the outside; they were not. At 11 weeks I began to get terrible backaches, radiating from my back on the same level as my "constriction band," perhaps because I had become more active. Sitting on a chair and leaning forward until my upper body was against my legs helped to ease the pain.

At 12 weeks I was feeling much better. I could run short distances and help the coach of my grandson's baseball team a little. The balls of my feet felt as if they had duct tape wrapped around them and my toes still didn't feel right. I wasn't sure that I even knew what feeling right felt like anymore. My constriction feeling was still with me. One humorous note is that if I would hit my leg, it would vibrate down to my toes. It's as if you stretched a spring and then hit the side of it. I considered myself to be very lucky. I had heard somewhere that if things didn't work after 12 weeks, they probably never would. The only thing that was still out of order was my sexual equipment. As I write this, 15 weeks, my sexual equipment has just come back on line. I am glad that the 12-week cutoff wasn't absolute. I consider myself very lucky to have recovered as well as I have.