My experience of Transverse Myelitis

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I was on holiday from France, where I now live, in Norfolk England, where I used to live, seeing friends and family. One evening, on our way to supper with friends, I felt a slight discomfort in my lower back, followed by pins and needles and tingling going down my left thigh. During the evening this continued down my leg and the leg became weak. The following morning I noticed the same thing starting to happen in the right leg. So I went straight to the Accident and Emergency department of the Norfolk and Norwich Hospital arriving at about 7am. I could no longer walk and my husband had to find a wheelchair for me. I was able to go to the loo on arrival, but later during the morning it became clear that I could neither empty my bladder nor squeeze my buttocks and a catheter was fitted. I was seen by various doctors and given an injection of steroids, before being transferred to an orthopedic ward. During the next few days I had MRI scans on my back and later my head to eliminate the possibility of a tumour (I had had breast cancer the year before) or a slipped disc ( I had slipped one more than 30 years earlier) or a thombosis in the spinal cord. All proved negative, and I was handed over to the neurological team. This meant moving wards from a relatively calm atmosphere to one much more complicated. There were 6 beds in each ward and many wards connected by a passage with no doors in between, so the noise levels 24 hours a day were constantly high.
There I had a lumbar puncture which again showed nothing. The doctor wanted to know if I had had any infection in the previous few weeks, and I told them that I had a bout of diarrhea the week earlier. At this point the consultant diagnosed idiopathic Transverse Myelitis at level L1-2, in my lower back. I and my husband had never heard of this before, and we soon learnt that it is very rare. But fortunately I had come to a place where they did know about it and promptly gave me IV steroids for three more days. I was seen by a physiotherapist, an occupational therapist, and as this hospital is a University teaching hospital, by many groups of students who wanted to see this rarety!
I left hospital after 10 days, having had the catheter removed beforehand. But for my husband the saga was a nightmare as we had no home base in the UK. He managed to find a cottage all on one level that we could rent for a few days, while I recovered from the trauma of being in hospital, before being escorted back home to France. Meanwhile he drove the car back home, ready to greet me when I arrived.
There I was seen by my GP, who had to give me antibiotics for a UTI following the removal of the catheter, and soon by the consultant neurologist at the local Centre de Re-education, or rehab hospital, who was able to admit me to this excellent centre. By pure luck it is only 10 minutes from our house and there I stayed for 2 weeks having 4 or 5 hours a day of physiotherapy, hydrotherapy, swimming and sophrology (relaxation). Over 5 more weeks going 3 or later 2 days a week, I made good progress and moved from a wheelchair to 2 crutches and then to one stick and finally walking unaided. But of course I was left with the numbness, strange sensations, burning in some areas and stiffness everywhere, which have continued for the last 18 month since my diagnosis. I make sure to take exercise everyday and am much stronger now than I was. But I still have to be very careful not to overdo things, and make sure to rest when I need to.
I understand that these consequences of TM are unlikely to change very much in the future and I am gradually getting used to the new me. But I also realise, having read about many other sufferers, that a number of factors are lucky for me: 1) my lesion is low down, so only my pelvis, legs and feet are affected, and the rest of my body is completely normal; 2) I was 68 when this happened, and not a small child or a young person just starting out on life; 3) my onset was sudden and quick, so I was diagnosed and given steroid treatment early to prevent further damage, which has enabled me to make a better recovery than some people can make.
Best of luck with your journey with TM to anyone who reads this.