Wednesday 10 January 2007

I can feel the wheel, but I can't steer...

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.


  1. ..and you will always be the same man you always were.

  2. I'm really sorry to hear that. (And sorry I can't think of anything less trite to say.)

  3. Your spirit continues to be inspirational. I've just begun to swim again thanks to your telling me that symptom flare-ups do not make the condition itself worsen. Like you, I find exercise to be so calms me down and helps me focus (which is becoming more and more difficult lately).

    Will you have another MRI to check for other lesions?

  4. Dear ST,

    As a long time lurker I just wanted to say how sorry I am to read that things may be getting worse. I have to say I admire your frankness, and that I hope that you can draw strength from your many friends, and correspondants.

  5. As of right now, I'm saving money for this...or something like it if I can't get together the money in time for that.

  6. I knew that was going to happen. Sorry! Just think of it as twice the support?

  7. As of right now, I'm saving up for this...or something quite like it if i can't get the money together in time for this round.

  8. Labels, especially those applied to you by other people, are not usually very helpful. So I suggest NOT carrying a label around for the rest of your life.

    I think everyone reading this will be pleased to hear you say you won't be letting this beat you down. Good for you, Swissie. So I say, bollocks to the label. You may have a particular medical condition. It is not your defining feature.

    Yes, we could all tease you by suggesting what we think your defining feature actually is... heh heh.

    Actually, at the moment, I think you're a proper battler. And that's a good thing.

  9. It's not often that I can say I understand where you are at, but I have experienced a failure of my "seals" as you so kindly put it when I've dealt with kidney stones in the past. There is something so very unsettling about this.

    You are, as always, in my thoughts and prayers.

  10. (If this posts twice I'm sorry. Blogger is acting up a little)

    Nothing self-indulgent about it. You've been and continue to be strong and courageous about the whole thing. You remain in my thoughts.

    Mark said it well. You'll always be pretty stellar.

  11. I don't think it's self indulgent - In fact, I'm surprised you don't mention it more. It's not something I'd ever heard of, so its interesting to find out more.

    Personally I find labels helpful. Especially ones that you can attach to yourself that say "Please wake me up and/or throw me off the train at...."

  12. Just wanted to let you know I'm thinking of you.

  13. I'm really sorry you're a bit more uncomfortable these days, ST, but your spirit is to be applauded. And thank you for sharing; I'm not sure if I could do the same, so I find that to be very admirable as well.

    Ecuador, you say?! You deserve a fun trip, no doubt. Can't wait to hear the stories already.

  14. I saw this the other day and thought about you.

    It sounds bonkers but similar therapy has worked for other autoimmune conditions...

    Hopefully you'll never need it. If you do, hopefully a little more will be known by then.

  15. I've heard of this for gut infections - and oddly was only talking about it yesterday - but I've not heard it talked about in relation to MS. Interesting. It's not something I ever thought I'd possibly have to decide about one day though. Maybe I won't!

    thanks for the link though.