Journal Volume 3 - June 2008
I am 50 years old and my name is Ivor Claassen. I was diagnosed with Transverse Myelitis on the 11th of May 2007. Thinking back, my symptoms started about three weeks prior to my diagnosis. At times, I would get out of my bed in the morning and walk/bump into the bed or chest of drawers on my way to the bathroom. My wife also noticed it, but we put it down to clumsiness or dizziness from getting out of bed and standing up too quickly. At one point, my fingers started going numb. My left elbow was sore for no particular reason. There were times that I felt very anxious. While at work one day, I had an intense pain stab me in my shoulder blade. This pain then moved to my spine and up my neck. Strange things were happening to me; things that I had never previously experienced. I consulted my general practitioner on numerous occasions during this period with various symptoms. Mostly his diagnosis was hypertension/stress. He would then prescribe one thing or another and send me home. The numbness in my fingers he put down to hyperventilation and he told me to get myself a brown paper packet and blow into it. Nothing helped.
Then on the 9th of May, I found I could not pass water. I consulted my GP who again said that my problems were due to hypertension and assured me that things would get better. On the 10th of May, 24 hours later, I had still not been able to urinate. I decided to go to the emergency unit at the Wilgers Hospital. They immediately catheterised me, did various blood tests and sent me home with instructions to come back the next day so that they could remove the catheter. That afternoon I had another pain attack my shoulder and neck. The pain was so intense that my wife insisted we go back to the hospital. I received various pain medications to relieve the pain but to no avail. The doctor treating me at the emergency unit was apparently confused by my condition and telephonically sought the advice of a neurologist, Dr. Anton van As. He instructed that I be admitted to the hospital for observation. Dr. van As came to see me on the 11th of May and initially he thought that I might be suffering from depression as I had recently experienced a personal trauma. He then called a Psychiatrist.
Later that afternoon I had another attack in my shoulder and neck. I then insisted that the nursing staff call Dr. van As back. He did, and it was then that he said that I should go for a MRI scan. Even though it was after 5:00 on a Friday evening, he arranged for a scan to be done at 6:00 that evening. By this stage I had great difficulty in walking due to weakness, unsteadiness and loss of balance. My left arm didn’t function at all. My wife pushed me in a wheelchair to the car, helped me in the car with great difficulty and took me to the MR Building. The MRI revealed a high intensity lesion in the cervical spinal cord and a diagnosis of Transverse Myelitis of the cervical spinal cord, level C2 to C4, was made. Dr. van As informed us that high dosages of cortisone was the only way to keep the inflammation at bay and that he was going to put me on a 5-day course of 500mg intravenous Solu Medrol. By the time my wife had me back in the ward, the nursing staff was ready to set up the drip.
At this stage, I could do nothing for myself. My wife fed me all my meals. Bathing was a nightmare. Getting in and out of the bath was almost impossible and I was unable to bath myself. Even with my wife’s help, it took almost an hour to bath, wash my hair, shave, brush my teeth and get dressed. By then, I would be totally exhausted, almost unable to get back to my bed, and would then, quite literally, “pass out.” It was pathetic. Here I was, unable to take care of myself and yet a month ago I had been playing squash for up to an hour at a time with no problems. Most of my life I had been fit and healthy. Although never a fanatic, I had always looked after myself pretty well and had never been overweight. What was happening to me? What was this all about? I had never heard of this Transverse Myelitis and neither had anybody else I knew!
The cortisone did wonders. It’s magic. It made me feel much better (even though my body, especially my feet, was all swollen and my skin totally dried out). With much grit and determination, I started walking; at first very unsteady, but eventually I was marching up and down the corridors. I was determined that this was not going to get me under! At this stage, I was still catheterised. After removal of the urinary catheter, I still had major problems with urine retention. On the 14th of May a Physiotherapist came to see me and showed me various exercises which would help me with my balance, co-ordination, etc. My legs had dramatically improved, but my left arm was weak and almost useless. A small blessing was that my right and dominant arm/hand was never affected.
On the 17th of May, a follow-up MRI confirmed the abnormal signal in the cervical spinal myelum. A SSEP was also done which was clearly abnormal and showed marked slowing of conduction centrally in the region of the cervical spinal cord.
On the 18th of May 2007, after eight days in hospital, I was discharged. After a few days at home, I suffered a relapse. My walking had deteriorated; I was still battling with my bowel and bladder and had severe pain in my left arm. I was re-admitted to the hospital on the 24th of May 2007 and received a further three dosages of 500mg cortisone. A lumbar puncture was also performed specifically to rule out MS. I had informed Dr. van As that my cousin has MS and due to my relapse, Dr. van As wanted to make sure that I did not have MS. The cerebrospinal fluid was abnormal with a raised level of protein, but otherwise normal, with no signs of MS. What a relief!
I was discharged on the 20th of May 2007. I was weak and the relapse had had a major effect on me. At first, walking to the corner of the street was as far as I could go. With time and perseverance, I am now able to walk briskly for half an hour to an hour with no problems. I also saw a Biokeneticist who gave me a set of stretching exercises, as well as exercises for balance and my left arm. When I started doing these exercises, I could barely do them and would be absolutely exhausted after 5 minutes; but I am now able to cope much better.
I went back to work on the 2nd of July 2007. For two weeks I worked half day. Most afternoons I was exhausted and went to rest / sleep. Thereafter, I started working full day again and even though I am usually in bed by 20h30, I have been able to cope.
Dr. van As has been wonderful throughout my ordeal. He has re-assured me when I needed it and answered all my questions. Consultations with him usually last up to an hour. He is even telephonically available. These kind of doctors don’t exist anymore – time and money are usually all that count. He has made a real contribution towards my rehabilitation and peace of mind. Currently, the most important issues to him are improvement in my bladder and bowel, balance, muscle tone and my left arm. While nothing is “back to normal” at this stage, there has been improvement in all aforementioned areas. This has given me hope for the future.
On the 10th of August 2007 it will be three months from my initial diagnosis. I acknowledge that I have come a long way since then. One of my biggest fears was that I have MS. I have been assured by Dr. van As that there is no sign of MS. Another fear was that I would not be able to control my bladder / bowel. I still have problems with both. I still get up between 2 and 4 times during the course of the night, but I have never lost control and for that I am very grateful.
My short/long term goals are the following:
Presently I am still suffering from the following symptoms: bladder / bowel problems; left arm is weak and I am unable to lift my arm in front of me. I am, however, able to use my hand – eating and using a computer, etc.; my hands are “dead” and have pins and needles sensation; my joints and muscles are constantly sore; my skin has crazy sensations including hypersensitivity, pain, cold, wet, hot, tingling, burning; I am unable to sit for long periods of time; When adjusting my sitting position, I have “bugs” running down from my neck to my toes.
I have had tremendous support from my wife, Karin; my daughter, Tammy; my colleagues; my mother and father in law, my church – numerous visits from Rev. Beryl Donkin and prayers from the prayer chain group; and Dr. Anton van As.