Transverse Myelitis: Steve Holden’s story

Steve Holden first experienced symptoms of transverse myelitis in 2007. In this article he describes the events that led to a final diagnosis six months later, and talks about his day-to-day life almost three years on.

Feeling unwell

Throughout June 2007 I had suffered from numbness and tingling in my right hand. One morning I found this had developed into weakness in my right arm, this wore off during the day. I did however feel unwell, nothing I could pinpoint.

That evening I had extreme pain in my neck and shoulders. I went to bed early with some painkillers but could not sleep.

Next morning I saw my GP. I still had severe pain and now had weakness in both arms. He manipulated my neck and arms and was unable to pinpoint the cause but suspected carpal tunnel syndrome. He did however send me for an x-ray of the neck at an adjacent hospital. Once the x-rays were completed I went to stand up. I had no power in my legs, my right leg shook violently with clonus. I tried to stand again but slumped to the floor. I had lost the use of my legs and could not move my arms.

Taken to hospital

An ambulance was called and I was taken to hospital. Here I encountered a problem. Ten years previously I’d had a disc decompression in my lower back, this had recently been causing me problems and I had been advised of a grade 1 spondylolisthesis and stenosis at the lumbar vertebrae L4-L5. The A&E staff thought this was the cause of my problem and proposed pain relief and muscle relaxants, they did not want to admit me.

I did not show any signs of improvement and tests were carried out. They found I had loss of sensation to touch (sharp, blunt, hot & cold) from the nipple line down. The weakness in my legs and arms continued. My chest was getting tight and my breathing laboured. I was also retaining urine so my bladder was emptied and a catheter installed.

Later in the day they suspected a prolapsed disc in my neck. I was put on a spinal board and a neck collar fitted. They then transferred me to a London hospital late at night for an MRI scan on my brain and spine. A neurosurgical team were on standby.

No confirmed diagnosis

The neurologists suspected inflammation of the nerves in my neck but could not exclude a cord infarct. I had blood samples taken and frequent blood pressure, temperature and lung capacity tests and was given a course of steroids via a drip. A lumbar puncture was also carried out.

I could not move anything from the neck down. I was also incontinent. Very frightened and fearful for the future. I pushed the doctors for a confirmed diagnosis and subsequent prognosis; the doctors were reluctant to provide this which just added to my anxiety.

Recovery and rehabilitation

Within two weeks I could move my left foot and started to have some movement in my left hand although very shaky. I was transferred back to Guildford Hospital and put on the stroke ward. Over the next few weeks I found I could move more of my body. Attempts to start physiotherapy were problematical as every time I was sat up or hoisted into a wheelchair my blood pressure dropped. This would in part be helped by a tight fitting corset. A tilt table was used later.

After six weeks I was able to sit in a wheelchair for extended periods without my blood pressure dropping too far. I was transferred to a small hospital in Haslemere for rehabilitation. I would be here for four months and receive intensive physiotherapy and support from the occupational therapists. I also received treatment for depression and learned relaxation techniques. Being closer to home this enabled more visitors. The support of my family and friends has been very important throughout my recovery.

When I arrived at rehabilitation I needed hoisting and was dependent on staff for all my basic needs including feeding and toileting. By the time I went home I was able to walk short distances using a frame. I had mastered intermittent self catheterisation. I could just about manage to lift a fork in my left hand and therefore able to feed myself.

Finally getting a diagnosis

During my stay the Hospital GP’s and therapists were as keen as I was to have a confirmed diagnosis. It was therefore arranged for me to go back to London for a review. This finally happened in January 2008, a month after I had been discharged from hospital and settling back into home life.

I was seen by the consultant neurologist who had looked after me at the start of my illness. He said I had made a wonderful improvement but still had a lot of work ahead. He was pretty sure that I had Transverse Myelitis, caused by a spinal cord inflammation. What had caused this was unknown but likely to be a one-off event.

I finally had a diagnosis and started to search the internet for details. The Brain and Spine Foundation and Transverse Myelitis Society websites offered excellent guidance on the condition. I was pleased to finally know what had happened and have an indication of what to expect in the way of recovery and what I could do to help. I also learnt it was a condition and not an illness that could be cured. I found this a little unsettling.

Three years on

Getting on for three years later I have been left with severe weakness in my shoulders and biceps. I am now under a Professor of Peripheral Nerve Surgery who is looking at possible nerve and muscle transfer surgery to try and improve my arm function. I still suffer neck and shoulder nerve pain. I have tried different drugs to help with nerve pain with little effect. I have recently started using Gabapentin and this seems to be helping. I have also found Acupuncture beneficial.

I can take a few steps unaided now. I have used functional electrical stimulation (FES) to overcome toe drop in my right foot. The NHS would not fund FES which is a great shame as I had good results using this equipment. I use walking sticks around the house and a frame or wheelchair when out and about.

I have a fibre rich diet, use a probiotic yogurt and drink cranberry juice to help keep the bowel and bladder functioning. D Mannose has also been beneficial keeping urinary tract infections under control. An anti spasm drug is used to reduce bladder cramps. Bowel urgency can still cause the occasional embarrassing problem.

My muscles are very tight and I still get clonus; a muscle relaxant is used to help overcome this. I have also found fatigue and depression to be issues. I find stress to have a seriously adverse effect on my health.

Remaining positive

I try hard to remain positive. I have been using a local Inclusive Fitness Initiative (IFI) accredited gym. Although limited in the activities I can participate in, the workout brings great benefits and enhances my wellbeing more than I would have imagined possible.

I am learning to get on with life and starting to enjoy it again. I am finding things I can do and not dwelling on those that I cannot. At the age of 47 I have many things I still want to do. I now work part time and have regained my driving license and have a Motability car with some minor adaptations. My recovery has slowed greatly but I still find small improvements and take encouragement from these.

Further information

If you have any questions about transverse myelitis or any other neurological topic, call the Brain and Spine Helpline on 0808 808 1000 or email helpline@brainandspine.org.uk.

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