Journal Volume 1 - January 2006
Article 27
In Their Own Words In each issue of the Journal, 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. We are particularly grateful to those people with Acute Disseminated Encephalomyelitis who wrote articles for this publication of the Journal. You may submit your stories by sending them either by e-mail or through the postal service to Sandy Siegel. Please be sure to clearly state that The Transverse Myelitis Association has your permission to publish your article. ADEM: Judie Pacius My story begins the year I was turning 30 years old. I hated the thought. Thirty was old and I certainly wasn't old. I kept saying over and over to people how I hated this birthday and I wasn’t going to celebrate. In no way did I realize how much I was going to appreciate the fact that I could celebrate another birthday. The beginning of 2004 was an extremely stressful time for me. Work was killing me and to top it off, my mom and brother became ill. But I figured I could handle it. After all, I had never been seriously ill in my life. I had never even been to the emergency room let alone had to stay in the hospital. I was a very healthy 29 year old woman, or so I thought. Once things had calmed down, I figured things would go back to normal. One day out of the blue my right foot felt numb. I convinced myself that it was the platform boots I was wearing and left it at that. A few days later I began to wake up with stiff necks and I would get daily headaches. This was nothing new because I was a lifelong sinus sufferer and headaches were nothing new. These were increasingly hard to get rid of though. Next, I began to get a strange stiffness in my rib cage area. As this increased, it felt like I was wearing a tight corset 24 hours a day. This whole time I was going to my GP and he assured me it was all muscle problems and gave me chiropractic adjustments. They sent me for blood tests to rule out anemia, diabetes and thyroid. My next symptom was that I woke up one morning and my whole right leg felt numb. Some days I felt so weak I didn’t think I could get out of bed, but they kept reassuring me it was only muscle problems and that I should take some Aleve. I ended up seeing every doctor in the office and I don’t think any of them believed me or took me seriously. They made me feel like a lunatic. I felt like I was living in a fog. I now felt like I was wearing one of those big dog cones around my neck. My head felt so heavy and pressure filled and the right side of my face was now numb. I went to work everyday even though I felt horrible because I thought that eventually I would feel better and I don’t think I wanted to accept that something was wrong with me. Finally, one of my doctors said that maybe we should do an MRI just to rule out anything neurological, but even she didn’t think there was anything going on. On Thursday I went for the MRI and by Saturday afternoon I was slurring my speech. I told my parents and boyfriend that I wanted to go to the emergency room and we did. It was April 3rd of 2004. They took me to an exam room immediately, because they thought I might have had a stroke. They did more blood work and general exams, like reflexes, and then they admitted me. The next morning they looked at the MRI and found that I had inflammation in my brain stem and spinal column. They did a lot more blood work and then they sent me for more extensive MRIs. They did a thoracic, brain and cervical MRI. They showed a lesion in my brain stem and one in my spinal column. I didn’t know enough then to even find out what vertebrae level the lesion was located. I feel stupid when people ask me now. They then did a spinal tap. They discussed with me that they thought it might be ADEM because of the way the lesions were presenting and possibly brought on by a sinus infection. However, they told me they could not rule out MS because I had shown a faint ' o ' band in the test of my spinal fluid. I had no idea what any of this meant and had never heard of ADEM. They always came to talk to me when my family wasn’t there which didn’t help. I was pretty much in a daze the whole week I was in the hospital so what little information they gave me I probably didn’t even comprehend. At that point I really didn’t care what I had; I just wanted to get better and go home. They put me on IV steroids for a week and then sent me home with oral steroids that would taper off in two weeks. For those two weeks I did feel better; stiff as hell but stronger. When I began tapering the pills, I felt weaker. I ended up back in the hospital overnight, because I became extremely weak again. My neurologist decided not to put me back on steroids. He didn’t feel that it was a relapse or MS. He felt that my body now just had to repair itself. This time I couldn’t walk out of the hospital and I completely lost my sense of balance. I had to use a walker and for the first few days even eating was hard, because every muscle, including my jaw muscles, were weak. My headaches were horrible; worse then any sinus headache I had ever had and nothing helped them. I was so tired I had to nap everyday and was in bed by 10 PM. I couldn’t sleep because I couldn’t find a comfortable position because of my head and neck. I also was up every two hours to go to the washroom. I had very little control of my bladder and if I didn’t make it there in a minute, I often had accidents. My mother had to help me shower and dress and pretty much had to treat me like a baby. This was all so humiliating for me. Over the next few months I went back and forth. Some days I felt stronger and then the next day I would be numb on my whole right side and crying hysterically. That was another side affect; I was an emotional wreck. I also had horrible, uncontrollable hiccups that were impossible to get rid of. I don’t know how my loved ones put up with me, but I’m glad they did. It was definitely slow going and very scary. What frustrated me the most was that there was very little information I could find and my doctor was no help. His only answer was that he didn’t know how long it would take for the myelin to repair itself. He also said that the only way that they would know if it was MS or not was if I had another attack. When I asked him how I would know if I had another attack or if I was just having residual affects, he just said that I would know if I did. Believe me, this was no comfort. I was scared that every time I felt numb that I was getting sick again. I spent my 30th birthday on May 23rd mostly on my couch happy to be alive. I actually was able to venture out of the house for the first time in weeks to go to dinner with my boyfriend. That was the best birthday present, but was I pooped by the time I came home. By June I felt about 75%. At this point my GP sent me back to work, even though I didn’t feel ready to go. Over the next three months I still had my set backs, but by September I was feeling mostly back to myself. If I overdid exercise or sometimes for no reason at all, I would become numb again but not as bad as the time before. In October I had my follow up MRI. It showed that my lesions were larger then the initial MRI. This sent me down a depression spiral again, even though my neurologist told me that this was as large as the lesions were probably going to become and the good thing was that there were no new ones. He scheduled me for another follow up in early December. All I thought about for the next two months were those damn lesions. I didn’t understand it. I felt better. How had they become larger? A week before Christmas I got the results from my final MRI. They were smaller and there were no new lesions. To say the least, I was ecstatic. I’m at about 98% now and very happy to be alive and 31 years old. I still do have some residual affects. I still have numbness in my fingers and sometimes I still get horrible stiff necks and headaches; but not very often and not constantly. I wish I had been able to find this site when I first was diagnosed. I think it would’ve comforted me to see other peoples’ stories and similarities to what I was going through. I wish the best for everyone who is suffering through this scary illness. Please don’t give up; it will get better! Judie Pacius |