As you will know, I have been diagnosed as suffering from Transverse Myelitis. I have a lesion (or “sclerosis”) on my cervical spinal cord that has damaged the myelin sheath and affected the transmission of nerve signals down through my body.
My diagnosis is not definitive and may only be a transient one: if I have another “attack”, then I will be diagnosed with Multiple Sclerosis. It’s an attack that could happen tomorrow, could happen in twenty years time or may never happen at all. The symptoms from my existing lesion are so widespread across my body that I’ve actually wondered how I will know if I have had another attack anyway.
Perhaps it’s a little self-indulgent of me, but here is a catalogue of the symptoms that I experience:
-> A “pins and needles” sensation in my hands and (to a lesser extent) in my feet
-> A weakness across my shoulders and down both my arms. I’ve never exactly been mr.muscle, but I have had quite a significant loss of power and the muscles have actually started to waste, reducing power even further. I am now actively taking steps to try and minimise this damage through a thrice-weekly exercise routine using (tiny) weights
-> A loss of sensation, or a feeling of “deadness” that extends down my arms, my sides, my thighs and into the soles of my feet. Some days this feels worse than other days, but when I scratch my ribs, I only feel it at a distance.
-> A loss of endurance – this is a relative thing, as I’m still doing most of the things that I was doing before, only I do some of them more slowly and it takes more effort
-> I sometimes get the night-sweats
I’ve had many of these symptoms, to some degree or another, for 18 months. Some days are worse than others, but I feel most of those symptoms every single day. They have become a fact of life for me and I have more or less learnt to deal with them. I exercise regularly (four or five times in a week), and this can make my symptoms flare up, but it apparently won’t do me any long-term harm, and has the immeasurable benefit of making me feel better about myself.
This is the way things are for me, and I do the best that I can to cope with it. There are plenty of people who are far worse off than me. This is an inconvenience in my life, but it does not really stop me doing anything. I’m certainly not going to just sit around feeling sorry for myself and waiting for something else to happen.
I think I’ve been experiencing new symptoms. Amidst everything else, it’s kind of hard to be certain, but I’m reasonably sure that things are moving.
-> I have got a very specific sensation of numbness in the big toe on my right foot. This is different to the general loss of sensation I have in this foot.
-> If you’ll forgive the overshare, I am noticing that my “seals” (both of them) are weakening. I’ve never had the strongest bladder in the world, but I’ve always had full control of my “on” and “off” switches. Although this control is still largely in place, the use of the word “largely” probably tells you everything you need to know.
-> I have developed a pain in my neck, which is particularly noticeable when I am lying in bed. I have started sleeping without a pillow. I had something similar in the spring of 2005, and it turned out to be the first symptom of the lesion that was growing on my spinal cord. I have no idea if this is a sign of a new lesion or is simply the old lesion flaring up.
I don’t really know what to do. This is potentially a significant moment as it could lead me towards a firm diagnosis and a label that I will carry around for the rest of my life. I’ve already got a label, of course, and lots of people have labels: I had a sad moment at the doctor the other day when I went in to get some jabs for our trip to Ecuador. As the nurse brought up my medical record on the computer, a little window popped up telling her that my “Primary Condition” was Transverse Myelitis.
Life goes on, of course, and I’m hardly likely to let this new development beat me down. My label might be about to change. Everything else remains the same.
Podcast: The West Wing Weekly
12 hours ago