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.

Sandy, I was diagnosed with TM in September 1991. I fell out of a bathtub while showering and landed flat on my back. I was at a Holiday Inn in Virginia Beach, VA while traveling for the government. I fell while on the job, which is the reason I was able to file for a Worker's Compensation Claim. I will talk more about that later. Anyway, the evening I fell happened to be my 48th birthday, the 28th of August. I had just dropped 40 pounds of weight from my six-foot frame three years prior. I quit both drinking and smoking cold turkey. I felt in the best shape of my life. After reporting the accident to the hotel management that evening, I ate dinner and then retired to my room for the night. I had, at the time, just a slight discomfort and soreness in my lower back as a result of the fall but no real problem.

The next morning I drove the truck back to my duty station in Philadelphia. I reported the accident to my boss when I arrived back and went home. The holiday weekend was coming up and I was looking forward to being off the next four days. I must state here, I had nothing wrong with me prior to the onset, no flu shots or upper respiratory infections, colds, or any other maladies that I know of affecting me at this time. Following a pool party at my home on Saturday afternoon the 31st of August, I awoke early to go urinate and could not. So, I went back to sleep, got up at five to go golfing, tried to relieve myself again, but could not. By the time I finished my round that morning I was busting.

I contacted my primary physician's office and was instructed to go to the ER and to have a catheter inserted and a urinalysis done. I was discharged to go home four hours later with the Foley still in me, with a slight UTI and instructions to follow up with my primary and a urologist on the third of September. The morning of the third I awoke and immediately had a hard time keeping my balance and had trouble walking. When I saw my primary that morning, she thought that I was having trouble walking because I was nervous about my urinary problem. She made me an appointment for me to see a urologist later that evening and sent me home. My gait deteriorated steadily during the day and by the time the other doctor saw me, without even an exam, he blurted out that I had a ruptured disc and had to go to the ER ASAP. My wife got me to the hospital in ten minutes. While being wheeled from my vehicle in a wheelchair by hospital personnel, I became completely paralyzed to level T-6. Beside the urinary retention, I started bowel incontinence. I was admitted, transferred to another hospital immediately for a MRI, and then sent back to the original hospital. I was treated with prednisone and had another MRI done the next morning. I also had a CT scan, EEG, EMG, x-ray and spinal tap.

Two weeks later after the process of elimination and a misdiagnosis of Gullian Barre, I officially had TM. I spent another two weeks in this hospital and was then transferred to a rehabilitation facility. My bowel incontinence reverted to constipation by this time and I was taught how to digital stem. I also lost my sense of taste. I had been taking Effexor for a previous depressive problem and I had started slipping further from reality. So, they changed me over to Prozac, which caused a severe hallucinatory problem. I had to have a watch posted in my room for four days till the drug left my system. I spent a month at the rehab facility.

I really was not feeling any pain at this time. After outpatient visits and my therapy at home, I eventually graduated from wheelchair to walking cane. I returned to work in April of 1992 driving a van equipped with adaptive devices since I still had no sensation in my legs. Even though I had no sensation, I was able to ambulate on my own. Everything was going along well except for the retention and my bowel problems. I was cathing four to six times daily, and my wife and I were slowly adjusting. Thank G-d, my mother-in-law was living with us at this time; my wife worked and mom took care of me during the day.

I had to have a penile implant done in July of 1989 since my function had not returned. More disturbing was the fact that about June of 1993, I started collapsing with no warning. I had to file for government disability since, at that time, I still had not been approved for Compensation. They were saying that there was no causal relationship between the fall and my condition. So, my lawyer filed an appeal.

My urologist has diagnosed me with interstitial cystitis. She is an expert in her field. Only ten percent of men are diagnosed with this condition. My hematologist also has diagnosed me with cryoglobulinemia. How's that for a triple bagger? Anyway, strange things started happening. I started having the sensation of being on fire at times from my lower back to my ankles and, at the same time, my feet would feel like they were frostbitten. My neurologist tried medications from a to z to try to alleviate my pain but wound up frustrated and apologetic because nothing helped. Then in August of 1996 sitting in a pharmacy waiting for medication I looked down and, lo and behold, my pants and floor were wet with urine and I didn't even know it. After five years I thought a miracle had occurred. I was so happy I broke out crying. The pharmacist made sure I got home all right.

Well, Sandy, the happiness was short-lived because then I became bowel incontinent again along with the urinary incontinence. I was going crazy. All the time my wife did the best she could to keep me focused. My wife and my mother-in-law again pulled me through this stage. The bowel incontinence again returned to constipation after a month, and since they couldn't control my urine flow, I had a suprapubic catheter inserted in 1996. I also had to have a Baclofen and Morphine pump implanted in the beginning of 1997. I had started leg spasms and pain that was extremely severe. The pain had become so severe that I tried taking my life. How my wife got to the gun before I pulled the trigger, I'll never know.

Presently, I am having severe bladder spasms. A new surgery is scheduled for next month so that another implant can be inserted. I think they're going to start calling me the bionic man. I'm currently unable to ambulate but have been assigned a PT nurse at home who has me walking some with a walker.

My Workmen's Compensation Claim was finally approved in January of 1998. From what I understand, between my neurologist and one of their own doctors they agreed that there was nothing else pointing to the TM except for the occurrence of the fall. They approved it, because they could not disprove that the fall caused the condition.

After my wife passed away, a chair lift I had ordered was finally installed and I can finally reach another level. Good thing, because now mom has been diagnosed with arthritis of the spine. She has just had two epidurals done and I'm trying to help her as much as I can. Helping her is keeping me occupied and also keeps me from thinking about my own problems. If it had not been for my wife and my mother-in-law, I never would have made it on my own.

My case experience seems to be closely related with Debbie Ziler's story, and like her and everyone else, I still consider this a nightmare. At least that's the way I feel. With all the ups and downs, I never know what to expect.

Well, that's it, Sandy. I hope I haven't bored everybody and I hope I've helped someone in some way. If anyone wants to contact me, my e-mail address is golfjoe[AT SIGN]earthlink.com. Thank you.

I am 21 and diagnosed with Transverse Myelitis.

I woke up on Tuesday morning the first of June 1999, to a numb feeling in my feet. I figured it was nothing, just that I slept wrong. I got dressed and drove myself the 45 minutes to work in Santa Rosa, CA. I arrived at work at about 7:15 that morning and the numbness had traveled a little farther than my ankles. I work in a mortgage company and am on my feet all day. By about 11:00, my legs were numb up to about my knees. It was then that I decided that I had better call the advice line at the hospital. I described my symptoms and they said that I should probably come in to be seen. I decided to finish up some work, so I didn't have as much to do the next day. I left work at about 3:30, having numbness up to just below my hips, and drove myself the 45 minutes back to my local hospital in San Rafael, CA.

I arrived in the emergency room at about 4:15, and again described my symptoms. They told me to take a seat and the triage nurse would be right with me. The nurse said that she thought that I just may have pinched a nerve and that I should go home and come back for a 6:30 appointment in urgent care. I let her know that I didn't think I could drive any farther since I was having trouble feeling the peddles. She then decided to have me stay at the hospital. At approximately 4:45, a nurse took me back to a room, followed shortly by one of the ER doctors. He ran a bunch of tests consisting of hot and cold, pressure, muscle control/resistance, pin pricks, reflexes, cotton swabs and vibration. I could move my legs fine, feel the hot and cold, reflexes were fine, but I couldn't feel sharp or dull (cotton swabs). After running these tests, he said that he would like to talk to the neurologist and would be right back. I figured that he would just tell me to go home and rest and take a day or so off my feet. He came back in about ten minutes and said he wanted to run a spinal tap. And that's when it hit me that I had a real problem.

They did the spinal tap and decided right then to admit me into ICU. To make sure that I was not holding any residual, they had me urinate and then inserted a catheter. Luckily, I wasn't holding any, so they took it out within five minutes of insertion. They gave me a couple of possible diagnoses, everything from transverse myelitis (TM) to Guillian Barre Syndrome. As they were getting me prepped and ready to send up to ICU, they then allowed me to call my parents. The only thing that my parents knew is that I was going to emergency because my legs were numb.

I arrived in ICU and they got me all hooked up to the EKG, IV (for the steroids), checked all my vitals, and had the respiratory therapist come in to check my lung capacity. My parents arrived at about 7:30 with my contacts, brush and magazines. All the stuff a 21-year-old needs. :-) The doctor came in and spoke with my parents and explained to them what was going on and what the recovery process would hopefully be. They also gave me some Vicodin and Valium, so I could get some sleep.

In a way, it felt ridiculous to give me Valium, since they were waking me up every two hours to check my vitals. My temperature was good, usually 98.2 to 99. My lung capacity gradually grew with time. It was generally around 3.08 or so. They also decided that since I was taking the steroids, they should also check my blood/glucose levels. From taking the steroids, or from eating, it almost always jumped to about 180. Occasionally they would give me an insulin shot, so it didn't get too high. I never got over 190 the whole time I was there.

The next morning, Wednesday the 2nd, when I awoke, I was happy because I had slight feeling from my toes to my knees. So, they decided to move me to the 5th floor. They had set up a MRI appointment for 1:00 that day, so I had something to look forward to for the day. Half way through lunch (pizza, apple juice and milk) the EMTs showed up with the stretcher to get me. The MRI building is across the parking lot (total of one mile), but due to insurance reasons, they have to take you in an ambulance both ways. The MRI took two hours. They first took pictures of the cervical and then the thoracic spine area. After the first set of pictures, the anesthesiologist came in and inserted a dye of some sort into my IV and then they redid the pictures. The dye supposedly makes things clearer. The EMTs then took me back to my hospital room.

When I got back from the MRI, the doctors came to see me again. I now had no feeling from my toes to about an inch and a half above my belly button. They were going to send me home Thursday, but since it had progressed farther up my legs, they said no. They were still checking my blood/glucose, vitals, and lung capacity, but has taken me off the EKG when I moved from ICU. At least since I was not in ICU, I could use the phone, have friends over and walk to the bathroom without help. I never totally lost muscle control, so I could stand.

The food was amazingly pretty good. Omelettes, French toast, or pancakes for breakfast. Pizza, chicken, or pork for lunch and chicken, spaghetti and the like for dinner. I had plenty of friends and family come by to keep me company, so that kept me from going insane. I made and received plenty of phone calls, and just tried to keep my hopes up, knowing nothing about TM.

Thursday they brought me a walker, so that I could get up and walk around the hospital. I needed the walker because I couldn't feel the floor with my feet. Later that day, they transferred me to a cane. Thursday was mainly a day of recovery and to see how my condition progressed. They decreased the 2-4 hour checks and instead were running the tests two times a day with steroids in the morning and blood/glucose three times a day.

Friday morning, after my steroids, the doctor came in and told me that today was the day I would be released! Yeah!!!! The numbness and tingling was now about three inches above the belly button. I was having pretty bad spinal tap headaches, but with Vicodin and not moving around too much, those were livable. As I was getting ready to leave, I decided to count my puncture wounds one last time. Let's see... three blood collections, two IVs, one anesthesia before spinal tap, one spinal tap, seven blood/glucose checks and three insulin shots. That's a lot! I'm sure not as many as some, but for me, that's a lot. I have a follow-up appointment for a week after discharge with one doctor, and an appointment with another doctor in 2 1/2 weeks after that. I'm not allowed to drive for three to four days, or until I can feel the peddles, and can't go to work for at least a week. I was told that we would discuss the driving and work situation when I go to the first appointment.

I have been discharged for two days and am really beginning to feel like my legs are stiffening up. I guess I need to do some more walking and moving around.

I hope in some way my story helps those reading it; whether it is family and friends trying to understand what I went through and am going through, or people that have been diagnosed. Either way, hold your head high and just remember that nothing is worth giving up on. Happiness is wanting what you have, not having what you want.