Journal Volume 1 - January 2006
Article 22
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: Campbell Anderson I took ill suddenly in May 2004. I was at work and went from feeling fine to feeling very ill; “flu like” during the morning and was sent home at lunchtime. Having spent the rest of the day in bed, I developed complete urine retention that night and was fitted with a fixed catheter in the casualty department of the hospital the next morning. I complained about feeling very unwell, feeling numbness and fever. I was told that I probably had the “flu” and sent home without further investigation. I continued to get worse at home and began bouts of violent shaking. I also developed more extensive numbness and increasing weakness. My elder son had returned home that week from working in the USA and I tried very hard not to cause a fuss. However, within two days I had lost the power to support my weight. We finally requested that the on call doctor make a visit to our home. He diagnosed Guillian-Barre and called an ambulance. I was taken to the same hospital and put into a medical Neurology ward with suspected viral Meningitis. However, a lumbar puncture identified proteins and an MRI scan identified multiple lesions in my brain. The diagnosis was changed to encephalomyelitis. By this stage, the numbness had spread to include my legs, arms and face. I could not see clearly due to double vision. I was so weak that I could not sit up. I was put on oxygen due to laboured breathing and was very sleepy. I was given intravenous steroids and rapidly improved. Within the ten days I was in the hospital, I got back on my feet and was able to shuffle along unaided. Repeated drug treatment eventually restarted my bowel movements after over two weeks of inactivity. I could feed and dress myself and I was going home to my very supportive and loving wife who had taken time off work to look after me. I was discharged after my repeated requests. Two attempts had been made to remove my fixed catheter, but my complete retention remained. I was questioned about my health prior to taking ill. I had suffered gastroenteritis one week before taking ill, but I do not know if there was any connection. I made rapid physical improvement during the following three months, and had my fixed catheter removed one month after leaving the hospital. I have self catheterised since that time. I joined a gym in August in a determined effort to regain full fitness, but I found that I was unable to follow even a basic routine and gave up. I became aware, however, that my mental capacities had been affected. My memory, particularly short term, has been reduced. I continue to experience blanks with what has been said to me and places I have been. My ability to concentrate on one thing is now much worse. I find myself doing one thing until something else catches my attention and I switch to doing that, and so on; I end up not completing anything. I taught math and was very good at mental arithmetic, but I found myself unable to subtract or remember simple multiplication tables. I have now improved, but not fully. I am still unable to retain information, such as a number when a new one is given, thus making any ordering or processing impossible. After the first three months of improvements, I seem to have reached a plateau and have stayed much the same since. I continue to have similar bowel and urology problems. I have difficulty going and stop before I empty myself resulting in frequent toilet visits and some embarrassing incontinent experiences. I have been given Alfuzosin, Detrusitol and Movical, but have found them to be ineffective. I suffer sexual dysfunction in having a greatly reduced libido, a reduced ability to obtain and maintain an erection, and an inability to reach orgasm. I have not found Viagra to be helpful. I suffer pain continuously to varying degrees. I experience a banding pain around the area of my lower chest, particularly on my right side. This pain extends down my trunk and down my legs to my feet. This pain feels like burning and can be jaggy like being prodded by needles. I was taking Gabapentine to reduce this, but stopped because of side effects which were causing me great confusion. I experience intermittent balance problems, tend to meander when walking, and am prone to stumbling and occasionally falling over. I have given up my cycle because of this feeling. I also suffer frequent headaches. I have lost some dexterity in my hands. My sleep is always interrupted by visits to the toilet or by pain in my feet. I use my catheter each evening before going to bed and now wear bed socks in an attempt to counteract this discomfort. I have found that all of my symptoms become much worse if I become tired or stressed and whenever I have a cold or other minor complaint. In November, following a visit to my neurologist and with a second lumbar puncture and MRI scan done in October and other blood tests, he suggested my encephalomyelitis was probably due to ADEM. His diagnosis was based on the range of symptoms I have experienced, the levels of proteins in my spinal fluid and the pattern of lesions which the MRI scans had identified in May 2004. The patterns of these lesions were such that MS was discounted. As far as I am aware, the May MRI focussed on my brain rather than my spine. The second MRI scan in October 2004 of my brain and spine revealed that the lesions had resolved themselves. I have no record of any lesions being identified, however, I recently saw another neurologist who identified demyeliminated nerve damage in my spine at T6 / T7 consistent with myelitis. He determined this by my response to touch by needles and cold metal above and below the region of the banding pain I had been describing. Campbell Anderson |