Transverse Myelitis and Fear of Recurrence

As I noted in a previous blog, I have had a small number of falls, and the latest one about a month ago left me wondering whether I was actually going to regain my progress. More than that I became quite anxious about the possibility of a recurrence or further development.

Before going on, let me say that I know how lucky I am. My original episode was in December 2009, and I have been able to get back on my feet and walk (in the last year with a stick… well I am 72). I know that many of you have been left with more handicaps than I have, and having read posts on our TM sites, I have noted the fact that many of you have had serious recurrences. As I said, I have been lucky so far.

I am also aware that many, if not most of you (whether you have advances in your symptoms or not), must be wondering what the future will bring and how you will cope.

My own experience is that I have good days and bad days. On a good day, I feel bright, want to complete several tasks, and I am keen to either get on my exercise bike (25 mins three times a week or so) or go for a walk (somewhere between 800 to 1500 metres about three times a week or so). On bad days (and these are not connected to exercise the day before!), I don’t want to get up early, would prefer to sit around, and find it hard to think or write, or do anything else constructive. It is on these days that I wonder exactly what is going on in my brain and spinal cord.

Bad days are accompanied by an increase in the severity and acuity of my referred chest pain (T6-8), mainly on the right and often end with me needing to use my TENS machine to relieve the pain. I am aware that the increased pain may be related to activity on some days. So yesterday Jan and I cut up finely a dozen or so limes and cumquats and ginger, and Jan then proceeded to make some marmalade. Yum! But today, the area of referred pain is broader, though tolerable. I know I have done some work with my arms and back muscles.

The fall from my chair, described in my last blog left me with some new symptoms over the next couple of weeks, and brought my fears to the fore. Yes, I had a very sore rear end from the bump onto a bum that lost a large amount of muscle tissue in 2009. But I also seemed to lose sensation, particularly in my right foot. My calf muscles seemed to be more flaccid and did not seem to work as well. My foot placement when walking became erratic, and I started to use my stick around the house to give me stability. I was immensely tired, and had a string of the bad days described above. I lost energy and enthusiasm, slept longer and till later in the morning, and was really quite dispirited. I was recurrently angry at myself for the fall and for not taking more care. Mostly I was cross that I allowed myself to lose concentration. I am usually so careful, and think and plan movements through.

There was an additional problem, maybe totally disconnected to TM, but which certainly followed the fall. In 2008 when I did my second Dan Karate grading, I failed to block a punch to the head (duh!), and got whacked in my right eye. I had lots of ‘floaters’ after that. Some weeks later lifting a 20Kgm bag of cement to complete work on a garden path, I had a very pretty ‘solar flare’ in my right eye, and new I had a retinal detachment. To cut a long story short, I had emergency treatment, and have had lots of follow-up treatment for both eyes to reduce the likelihood of further problems.

So, my jolting fall seemed to be associated with an increased loss of the range of vision in my right eye. No flares, no floaters, just increasingly fuzzy and limited vision. The question I asked myself was whether it was connected to the fall or to my TM. Was I actually developing Neuromyelitis Optica (NMO) as part of the disease process? Or was I just looking for problems and being hysterical? Well, we go to the Ophthalmic Surgeon for follow-up on Wednesday, so I will ask the question. Hopefully, he will reassure me and tell me not to be stupid.

There is an additional problem that may or may not be connected. From time to time during my bad days I find it difficult to concentrate. Like many people in their 70s I have also begun to forget bits and pieces in my short term memory. It seems to have been more noticeable since the fall. It is noticeable more because I have always had a fantastic memory for names of people and things, and anything connected with my career and research interests. I have always been Jan’s ‘ancillary memory’. So, my question relates to the possibility that my TM is advancing and moving me more toward a picture like early Multiple Sclerosis. Maybe. Or am I just looking for problems and being hysterical?

The problem is that there is not much to be done whatever the outcome. If I am not progressing, I must continue with my daily routines and tasks. I must complete the work that I have set myself in retirement. We must continue to work on the house and garden. I must continue my exercise regime. I must continue to eat the fantastic diet that my dietitian wife Jan has designed for us. I must continue to be as optimistic as possible. But perhaps plan for the worst?? Maybe.

Discussion and comments welcomed.