Hi everybody! TM Support Group in Sweden Ulrika Pettersson ulpe1924[AT SIGN]student.uu.se My name is Ulrika Pettersson, I am 23 years old and I live in Uppsala, Sweden. I have been a member of the TMA since 1999. A few weeks ago Sandy asked me if I wanted to start a local TM support group in Sweden. I said yes. So, I thought this might be a good time for me to introduce myself to my fellow TM’ers and share with you all my story. The onset of TM It all started on October 23rd 1991, when I was 12 years old. I had had a cold for about a week and I had a terrible cough. During my lunch break I was playing in the schoolyard and as I bent down to pick up a ball I felt a sudden, sharp pain in my back. It hurt really badly, but I figured it was all the coughing that had caused the pain and so I didn’t think too much about it. Later that evening, I was lying on my bed when I suddenly got a tingling feeling around my knee. It soon spread to the rest of the leg. I thought it was very unpleasant so I got up from my bed and went down to the kitchen. A little while later I started to loose the ability to control the movement of my legs. As I tried to take a step forward, my leg crossed the other so that I walked into things. My sister, who has always liked to tease me, asked me what I had been drinking. I, however, did not find her joke very amusing. My mother thought that I had just overstrained myself and so she sent me straight to bed. By then both my legs hurt really badly.  It was very similar to having bad growing pains. My mother rubbed my feet for a while and that made it a bit better. I finally fell asleep. But about one o’clock in the morning I woke up and now the pain in my legs was horribly bad. I sat up, put my feet down on the floor and tried to get up, but I couldn’t. My legs were too weak. I had to find another way to get downstairs to my parents’ bedroom. For some strange reason I didn’t want to wake my sister up so I slowly and quietly sat down and started to shuffle along the floor, using my hands. Somehow I managed to get down the stairs without getting hurt. When I got down to the hall outside my parents’ bedroom, I gently called my mother. She woke up, came out to me and asked me what was wrong. I told her that my legs were so weak that I couldn’t walk. She and my father then immediately called the local hospital. We were told that we should go straight to the hospital so that I could be thoroughly examined.  So my mother helped me to put some clothes on and then my father carried me out to the car and we went to the hospital. There, a doctor examined me and quickly decided to send me to the nearest university hospital for further examination. Waiting for the diagnosis I arrived at the university hospital in Uppsala at about half past three in the morning. A doctor examined me and checked my reflexes. In the right leg I had a negative patella reflex, whereas my Achilles reflex was intensified. I didn’t have any Babinski reflex. For my left leg the situation was the same apart from the fact that the patella reflex was highly intensified. The sensation was normal in the right foot and calf, but I had no sensation above the knee.  A few blood samples were taken and then I was sent to have a lung x-ray. The following day the patella and Achilles reflexes in the right leg were gone, whereas the reflexes in the left leg were back to normal. I couldn’t move the right leg at all, but I could lift the left leg a little bit from the bed. However, I couldn’t hold it up for very long. On this day the doctors performed a lumbar puncture. That was awful for me. First of all I had to lie on my side and that was very difficult for me because it hurt, and then the doctor had to stick me a few times before he hit the right spot. I didn’t cry but when it was over my face was all wet with sweat. This was also the day when the physiotherapy started, but I wasn’t really in the mood for it. I was very introvert. I think I was in a state of shock. I was really very calm; almost apathetic. The next day I was moved from the emergency ward to a regular ward. I didn’t like this. I had started to get to know the nurses and doctors on the emergency ward, but now I had to get to know a whole bunch of new people. The tiny sense of security that I had built up was shattered. The fifth day at the hospital I was examined on the new ward. First the reflexes, coordination and strength of my arms were checked and everything was found to be normal. My left leg had lost the Achilles reflex and I couldn’t lift it up from the bed anymore. In the right leg the patella reflex was back, but it was still only a very weak reflex. The sensation was strongly impaired in both legs, but more so in the right leg than in the left. The boundary of the sensation impairment was found to be at the level of the twelfth thoracic vertebra. What bothered me the most at this point was that the muscles of my bladder had been affected by the illness. I couldn’t empty my bladder. I didn’t want a catheter, so I didn’t want to drink anything. But after a while I just couldn’t take it anymore. My bladder was so full that I thought it would explode. So I got a catheter. I found that very unpleasant, because it hurt and also because my sensation was impaired so it felt really weird. Plus I was very shy. I felt sort of insulted but once I had the catheter I was still relieved, because I could finally allow myself to quench my thirst.  On this day I was also sent to have a MRI. It may sound strange but I actually liked that. It gave me a chance to be alone with my thoughts. The MRI didn’t show anything pathological. On the sixth day an EMG and a neurography were done and on the seventh day I underwent an ECG and an EEG. I was also sent to have a myelography. That examination was done with anesthesia. I really appreciated that. First, I was given a local anesthetic in my right leg to keep it from hurting too much when I was moved between beds and then I got a couple of tiny pink pills to calm me down a bit. I smiled and thought to myself that those ridiculous pills couldn’t possibly have any effect whatsoever.  But, of course, they worked. I soon started to feel really relaxed and a little while after that I was having a very difficult time trying to count the people around me. I got my anesthetics and fell asleep. I think I slept for about an hour, but when I woke up I felt like I had slept an entire night. It might have been that the artificial sleep wasn’t disturbed by dreams or worries. I don’t know.  Anyway, the myelography was normal. Now that a week had passed and all sorts of tests had been done the doctors were certain that what I had was TM. I was given steroids for eleven days; first intravenously and then in the shape of pills. The dose was reduced gradually. I also underwent an SEP. Rehabilitating and making progress As soon as the diagnosis was made, the physiotherapy began in earnest. I got a physiotherapist who was really good. I felt like she really cared about me. Not just my condition, but me. That made a huge difference. She took the time to talk to me and get to know me before we started the therapy. She made me want to fight and prove that I could do things. In the beginning of rehabilitation we mostly worked on stimulating the muscles. I would try to move my feet, toes or legs and at the same time try to focus on what it used to feel like when I could move them. It was difficult and sometimes I lost my patience, but after a while I started to make progress. I started to be able to move my left foot and toes and there was a slight activity also in the right foot. My sensation got better too and the boundary of sensation impairment was now at the level of the first lumbar vertebra. At this time I was allowed to get up in a wheelchair for the first time. This was almost two weeks after the onset of TM and I bet you can all guess that I was now fed up with just lying in the bed all day. The chance to get some change of scenery that the wheelchair offered was really what I needed and it made me feel a lot better. I have to say though that getting up in the wheelchair for the first time was more complicated than I could ever have imagined. My muscles had got so weak from me just lying in bed for so long that I actually had problems holding my head up the first day. As soon as my legs were strong enough, I was put on a special kind of bunk that could be tipped up so that I got to put some load on my legs. I also did a lot of arm training with dumbbells. Gradually, the training got tougher. I had to practice getting myself out of and back into the wheelchair. I practiced falling out of the chair and getting back in it. That was really hard and scary. Sometimes the training was so hard and it all felt so hopeless and difficult that I just sat on the floor crying. It was all so unfair and I just wanted to give up. At those times my physiotherapist meant everything to me. She never really lost her patience with me. Instead, she sat down next to me, hugged me and tried her best to make me feel better and want to fight again. On November 17th I could, for the first time in more than three weeks, lift my left leg an inch or so from the bed while lying on my back. I cannot even begin to describe how wonderful that felt. A few days later I could lift my left leg up to about 60 degrees. The Achilles reflex was back in the left leg and I had also started to regain the strength in my left foot. I could also move my right foot a little bit. I couldn’t lift my right leg yet, but there was some activity in the thigh muscle.  In mid-November the catheter was taken out, but I still couldn’t empty my bladder so the catheter had to be put back in the same day. The physiotherapy got even tougher and I started to train in the hospital pool. It was scary, but at the same time nice. I also started to practice with a walker. But I didn’t really walk. It was more like shuffling along using my left leg and putting almost all my body weight on the walker. Around this time I was also allowed to go outside for the first time. That was great. My physiotherapist took me downtown and we went to a hamburger restaurant. That was very nice as I was starting to get tired of the hospital food. For each day that went by I got stronger and I soon started to use walking trestles. Sometimes I secretly tried to use crutches in my room, but that was still too difficult. At one time I nearly fell and after that I didn’t dare to go on. But I really longed to be able to take care of and do things for myself so I just felt that I had to go on trying new things. But I did it all on my own when no one was watching me. I wanted to prove that I could do it without help. It paid off. At the end of November I managed to get myself from my wheelchair to my bed and back again without anyone helping me. And I noticed that I could lie on my side again. I had always slept on my side before I got TM. I hated sleeping on my back, but when I first got ill I had no other choice. But now I felt so free. I think that one has to experience it to fully understand how such a small thing could mean so much. I immediately showed the nurses my new skills and they, of course, reported to the doctors. The catheter was removed for the second time and now I could actually empty my bladder, but not very well. According to the medical experts I was now too well to stay at the hospital, but not well enough to go home. I needed intense physiotherapy and I needed to learn to take care of myself and the daily chores. Therefore, I was to be sent to a rehabilitation home. I protested, of course, but no one paid any attention to that. Once again, I felt like my world, my sense of security and my faith in the doctors had been shattered. On December 2nd I was discharged from the hospital. I was allowed to go home for the weekend, but after that I was to stay at the rehabilitation home for two weeks. Being home again was really great. I was so happy. I felt like my home town somehow had become so much more beautiful. And it was great to be back in our house, eating mom’s homemade food and sleeping in my own bed. Coming home was one of the happiest moments of my life. The rehabilitation home But the weekend passed and it was soon time to go to the rehabilitation home. That was the most horrible place I have ever been to. I didn’t want to be left there and I cried. But my mother and father were told that it would be better once I got settled in. But things didn’t get better. If anything, they got worse. I was so alone the first evening there. No one had the time to talk to me or pay any attention whatsoever to me so I just rolled into my room and felt completely abandoned. I don’t remember if I cried, but I think it’s quite possible that I did. The second day somebody came to wake me up. I was really sad and didn’t want to get up. A little while later the person came back and told me I had to get up, take a shower and get dressed so that I could eat some breakfast before I had my first physiotherapy session. I think it was now about 7.30 and I was told that the physiotherapy was to begin at 8.00. I tried my best to hurry up. I rolled into the bathroom and took a shower and then got dressed, but it took me a while. I then rushed out to get some breakfast. A girl who worked at the rehabilitation home helped me to get something in my stomach, but while I was eating my new physiotherapist came into the room yelling at me for being late. I got very sad and upset, but felt ashamed that I hadn’t got up on time. I had trouble holding the tears back as I went with her to get my first training session at the rehabilitation home. This physiotherapist was not very good. Yes, she teased me and tried to make me laugh, but sometimes it actually felt like she meant what she said when she called me different bad things. When it was time for lunch I asked the people in charge of the food if I could have something else than orange juice or milk to drink, because the doctors had told me that I shouldn’t drink orange juice or milk. They then answered that any other beverage they had must only be used at coffee time and that I could drink water. I was very surprised and a bit upset. At home we always had some sort of table beverage, apart from milk. Some time in the afternoon, a person came and asked me what I was doing just sitting around in the hall. I was supposed to be at school. But no one had told me anything about that. Anyway, I went with her to school. That turned out to be the only place where I felt reasonably comfortable. The teachers there chose to encourage me rather than yelling at me and they made me feel normal. I was also supposed to take music therapy. It was held by a middle-aged man. He told me to beat a few different rhythms on a drum. A couple of years earlier I had, however, had a music teacher who thought it was really important to know at least five basic drum comps so I found the music therapist’s exercises a bit simple. I told him that I could play five comps and showed him. Then he looked a bit offended and said that I obviously didn’t need any music therapy. The man just didn’t seem to understand that something I liked to do could be useful, if for no other reason than that I liked it. By the forth day I had become really fed up with it all. I called my old physiotherapist and told her how awful it all was and I cried. Then I called my mother and said that I just couldn’t stay there anymore. She came over and talked to the staff and they convinced me to stay one more day. I was told that I wouldn’t have to spend the evening alone. Mom went home and I started waiting for someone to spend time with me. But of course, something came up and I had to spend the evening alone anyway. The next day I had made up my mind. There was no chance that I would spend another week at that awful place. When my physiotherapist found out that I was going home she got angry and told me that if I didn’t work hard with the physiotherapy now I would never get any better. I felt guilty and got a bit scared, but still I was convinced that I wouldn’t get better physically as long I was miserable. So I went home that day and never returned to the rehabilitation home. Mom called the hospital and told them that I hadn’t exactly got on well at the rehabilitation home. It was then decided that I should come back to my old physiotherapist and have two sessions a day with her five days a week. That was truly a load off my mind. The way back At the hospital they seemed a bit disappointed with me for not staying at the rehabilitation home, but I don’t think they understood what it was like for me. I soon started to feel a lot better both on the inside and on the outside. After a few days with my old physiotherapist, I could extend my right leg against resistance and I could also start to walk with crutches. On Christmas Eve I managed to walk up the stairs in my home for the first time without using the crutches. I managed without them when I was inside the house, but I still used them when I was outside. I didn’t drop them completely until after a couple of months. After the Christmas break, I started to have physiotherapy in my home town. My biggest problem now was the bladder. I had urinary tract infections more or less all the time from the removal of the catheter until the end of February when I was put on Furandantin (a urinary tract antiseptic medicine). That put an end to the infections. My kidneys and bladder were examined, as well as my ability to empty the bladder and it turned out that I had a certain type of bladder dysfunction, where the urinary sphincter doesn’t cooperate the way it should with the muscles that contract to empty the bladder. This caused retention and was the reason why I had had so many infections. About six months later, my bladder was examined again and by then the bladder function was better. This meant that I could stop taking the Furadantin. The last real motorial improvement occurred some time during the spring 1993 when I started to be able to move the toes on the right foot a bit. Child or grown up? I think one of the reasons why I’ve coped so well with going through the experiences with TM is that I’m very stubborn. When I want something, I get it. But it wasn’t always easy. There were a lot of things that the medical people could have done better. I was often sad or angry when I was at the hospital. To me that seems normal. I mean, who wouldn’t be upset in that situation? Apart from having to deal with the pain and the other physical issues I also had to deal with being away from home for a long time. I had never been away from home before, apart from the times I had stayed over at a friend’s house for a night. My parents couldn’t be at the hospital all the time so I was left alone a lot. And most of the time, when my parents weren’t there, no one really had the time to talk to me or spend time with me. I felt like everybody at the hospital (apart from my physiotherapist) just tried to make me suppress my feelings. What they should have done, I think, was to try and find out why I felt the way I did. Also, when the diagnosis and treatment were discussed I was treated like a child. If anyone even talked to me, instead of just talking to my parents, that person would explain things to me as if I were a baby and didn’t understand anything. But when I was angry or upset or sad I wasn’t allowed to be a child. Instead, I should suddenly be all grown up. Once when I was angry and impatient a nurse actually yelled at me that I should “pull myself together.” I have often wondered how that nurse would have reacted if she had been in my shoes. My medical history after TM After TM I had no real problems with my health until 1996 when I got a urinary tract infection again. The problems continued and I also got blood in the urine; so much in fact that the urine was all red. In the autumn of 1997 I got another urinary tract infection and started to get blood in the urine pretty often. I went back and forth to the local hospital, but didn’t get any help until after a few months. By then I was really scared that there might be something seriously wrong with me. In the beginning of 1998 I underwent a cystoscopy and the doctors found a bladder stone that was a couple of centimeters in diameter. A couple of days later they removed the stone and since then I’ve had no more infections. But as if I wasn’t tired enough of hospitals after that, I got an ovarian cyst at the end of 1998, and it was removed with laparascopic surgery in the autumn of 1999. But my problems didn’t stop there. In the summer of 1999 I started getting problems with pain. My doctor thinks it’s nerve pain, but she isn’t sure and nobody seems to know if it is connected to TM or not. This kind of burning pain is rather common after TM but my pain problems didn’t start until seven and a half years after the onset of TM, so… Anyway, if I say that I think I’ve seen enough of hospitals and had enough of physical problems, I don’t think you would be too surprised. My life today I didn’t recover completely from the illness. I don’t have any nerve contact with the calf muscle and the muscle on the back of the thigh of my right leg. Those muscles are atrophic. Because of this I limp a bit when I walk and I can’t run. I still have problems with bladder retention and I have developed my own technique to empty the bladder as thoroughly as I can. The bladder problems are the worst of my physical problems. I get jealous sometimes of people who can just go into the bathroom to empty the bladder and then be back out again within a couple of minutes.  When it comes to the pain problems, I am still fighting to get help. I have had to fight before to get help from the medical people. I don’t know why some of them have such a hard time understanding the needs of their patients. Sometimes it is tempting to give up. I admit that. But if I don’t fight for my needs, then who will? I am an expert on my body and my problems and I have the right to demand help when I need it. When my problems make me feel down, I turn to a very special friend of mine. He has also had TM and I got to know him through the TMA. It really helps to talk to someone who has gone through the same things that I’ve gone through. I know that he doesn’t just say that he understands; he actually does understand. He has helped me a lot the last couple of years and I know that I have helped him a lot too. He will always have a very special place in my heart. Although my TM problems do take up quite a bit of my time, I will never let them take over my life. I have far too many other things to think of to ever be tempted to do that. I do get tired of the problems sometimes and I want them to just go away, but still I love my life and I love being alive. I have my family, my friends, a very sweet boyfriend and the cutest dog and cat. And I am only a few months away from getting my master’s of science degree in engineering physics. My dream is to then go on to get a PhD in either medical engineering or scientific computing and to some day in the (far) future get married and hopefully start a family.   By sharing my story with you, I hope that I can help someone just as I have been helped by reading the stories that some of you out there have shared with me and all other TMA members in previous newsletters. I hope that you are all as well as can be expected and, of course, I hope that, with the help of science, there will one day be a cure for all of our problems. It may happen, it may not. I don’t know. The important thing is that we mustn’t stop hoping, but also that we mustn’t forget to make the most of our lives while waiting for a possible cure. We may have our problems, but life still has a lot of great things to offer. So, come on and let’s make the most of it!!!

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