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 would like to introduce myself as a new member of the TM Association. My name is Marsha. I was stricken with TM on February 11, 2001. It was an acute onset, rather than taking a week or more to manifest itself. I was getting into the car with my son at 10:30 a.m. to go to the store when I was suddenly gripped with a severe pain in my left mid-back region. I waited for a few minutes to see if it would go away, but it remained as severe as when it started. We went ahead and drove to the supermarket and to rent some movies. As we did our errands, the pain worsened and spread to my right side, and then around to my abdomen, so that I had a band of severe pain all around my torso, up above my waist.

When we got home, I was doubled over in pain. I told my son that I was going to go in and lie down for a while to see if it would go away. I thought I might be having a problem with my kidneys, gallbladder or pancreas. I put heating pads on my stomach and back, and went to bed. The pain did not let up, but continued to worsen. After two hours of suffering, I had my son call a friend of mine to take me to the emergency room. We arrived there at approximately 1:00 p.m., and triage took me right in to a bed. The ER physician came in and examined me. I was given a shot of Demerol. The nurse asked me to get them a urine sample, but when I went to the restroom, I found that I could not urinate. I thought I couldn't go because of the severe pain. After
a period of time, the doctor told me that they were going to take an ultrasound of my abdomen. I was given three bottles of barium to drink. I was then taken for an ultrasound with contrast, and then X-rays. I was still in severe pain, and was then given a shot of Morphine, which also did not really help.

By this time, I was suffering from muscle cramps in both legs. I just thought it was "restless leg syndrome," which I have suffered from time to time. It kept getting worse, so that I couldn't lie still. My legs were driving me crazy, even with all of the pain medication they had given me. I kept trying to get up and urinate (I never could get myself to go), but by then, my legs had started feeling wobbly and weak when I would try to get up and go to the restroom. I attributed that feeling to the Demerol and Morphine. Then the transporter came to get me again, and I had a CT scan. I don't know if these tests showed anything other than an extremely full bladder, but at 9:30 they decided to admit me. I received another shot of Demerol.

By 10:30 they had arranged a bed for me, and wheeled me upstairs. They wanted me to get on the scale and weigh myself before getting into the bed, but by now, I could hardly stand at all. Two nurses had to assist me in getting on the scale, and then help me to climb into bed. I still thought the weakness was from all of the pain medications I had been given. An IV was started once I was situated, and I fell asleep after receiving more pain medication. I awoke in the middle of the night to two legs, which refused to move at all. I buzzed the nurse, and told her that I couldn't move my legs. They made note of the fact, and I guess I fell back to sleep. The next morning a neurologist was called in. He examined me, and ordered a MRI. My legs were so painful, as were my back and abdomen that I couldn't lie still. They had to give me Valium in order for me to go through the long MRI. It took over an hour, and thank G-d, the valium made me fall into a sleep. I awoke just as the test was nearly finished.

The days ran into each other, but not too long after, I was informed that I probably had TM. I asked what it was, and was told in layman's terms about the lesions on the spinal cord, of which I had two in the T-spine. They then decided to do another MRI of my brain, and to do a lumbar puncture to see if I had elevated protein in the spinal fluid. That came back positive, but my brain MRI was negative. They ruled out MS and Epstein-Barr, and the diagnosis of TM was confirmed. I was in the regular hospital for nearly a month with severe pain and paralysis. The neurologist put me on IV steroids, and after a few days, I started to regain minute movement in my toes, and gradually, was able to move my right leg slightly. My right leg was definitely less affected than my left. The legs were still quite spasmodic, pulling up and doing as they would. I had no bowel or bladder control at all, and a foley catheter had been inserted so that I wouldn't develop reflux in my kidneys.

The first part of March, the physicians felt that I had recovered enough to be moved to the acute rehabilitation facility in the hospital, so I was transferred to a different room in that ward. They began to work on me as far as rehabilitation was concerned. I still couldn't even sit up by myself, as I had no sense of balance from my ribcage down. Gradually, with steroid intake, I improved so that I could sit up, and move from bed to wheelchair. I then was able to shower every other day with the assistance of a therapist. I remained in acute rehab for two weeks, and was released to go home on March 15, 2001. I could barely stand with the aid of a leg brace on my left leg. I was taught how to catheterize myself.

Once I got home, I was terrified. I have improved over this period of time to be able to walk short distances. I have to be very careful as I have fallen quite a bit due to the instability of my legs. I have regained enough feeling to know when I am going to have a bowel movement, so if I can get to the bathroom in time, I am safe. I still have not regained the use of my bladder. I have severe neuropathy from the waist down, so that I have no feelings of pain to injury, hot, cold, or wet. I do have feelings of pain in my back and abdomen in the areas that were painful at the onset of my disease. I feel pressure in most areas from the waist down, but suffer from severe muscle spasms, which are very unnerving. I have to be catheterized every few hours. I am able to drive on good days, so that my son, who is my caregiver, and I can go to the store, or run other errands. He wheels me to the car in my wheelchair, and we go from there. At least on those days, I feel I have a modicum of freedom. A great deal of the time I am depressed. It is very hard to get used to being infirm. I hope in time I will adjust, and will be able to find a purpose to my life. Right now, I am still trying to get used to having TM.

Every morning, I awake and the first thought in my mind is that my life is altered forever. I am trying to get in touch with other sufferers of TM, so that I can have someone to talk to who knows what I am going through. I have five children, and most of them really don't understand the seriousness of this illness. My two daughters actually think that most of this is in my head, and that I could function as usual if I wanted to! I look forward to the day when I can deal with this and have a smile on my face, and be able to get on with my life. Right now, I am still trying to deal with the finality of my diagnosis, and to get through each day. I look forward to hearing from any sufferer who would like to exchange information, and perhaps help me in knowing I am not alone.

Marsha E. Scholes
3638 H St., #11
Sacramento, CA 95816
(916) 457-8205
Marshaberi[AT SIGN]AOL.com