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Friday, December 13, 2013

Transverse Myelitis: An odd connection

Over the last few months, I have repeatedly noted an odd connection - which does not seem to make sense. I wondered whether others of you may have noticed the same thing, and might be prepared to discuss with me on the blog.

I am tired today. Yesterday was a big day racing into Brisbane to get there early for my Thursday morning clinic. It is just over an hour's drive from Bribie Island, and though I feel comfortable driving, I am often tired when I arrive (particularly if the traffic is heavy on the motorway). I am often stiff and achy and have to stretch carefully before walking from the car park down the slope to the clinic.
In addition yesterday we had a tight schedule after the morning clinic. I had to pick up Jan, my wife, from a visit to the daughter in law, then go the the hospital to pick up my secretary, and then drive to a restaurant on the river for our research group annual Christmas celebration lunch. We had current PHDs and research staff, and a PHD who completed this year. It was a great celebration of a successful year (with publication of papers, several books, and completion of several successful PHDs (one is at a conference in the US, and another has begun postdoctoral studies in Hong Kong). So we toasted absent friends. It was all good fun…. Only one glass of champagne all lunch, I hasten to mention!
Then 3 hours later, we got back in the car and drove to pick up our 9 year old grandson who has just completed his year at school. Then we sat in traffic for 90 minutes to eventually get home.
Last night I was exhausted and slept deeply.
Today I did not want to get up, and my right sided chest pain is unusually bad. I have been trying to edit some work, but fell asleep twice for a short dribble-mouthed time……

Now here is the funny thing. My lower legs feel like I am wearing very thick woollen socks, and the sensation in my feet is worse than usual. My walking is less secure, and I am slower and more unbalanced than usual. BUT I also have strong urge to go to the toilet, but when I get there nothing happens; no wind, nothing… I have noticed all this before. Sometimes I notice the urge to go the toilet, and later remember my legs have been worse, sometimes the other way around, like today.

The only explanation that comes close is that the soles of the feet are served by the Lumbar 5, and Sacral 1 and 2 nerves from the spine. AND, so is the perineum around the anus. I am not sure exactly what I may be doing that creates this. All I know,is that tomorrow will be better - a bit. 

Is there anyone out there clever enough to explain what is going on?

Oh by the way, the book about my recovery, and my battles with hospitals and myself, is now up on Amazon Kindle. Just search for 'Taking Charge: a journey of recovery' The last bit of that is necessary, because there are quite a lot of books called 'Taking Charge...'


  1. You have an extremely busy life Graham. If I had to do what you did I'd be in bed for a week. I have had Transverse Myelitis for 7 years. My lesion is at T-6 and I am around 30% paralyzed from the diaphragm down. Because I do very little activity and have a very standard routine, I find my energy level is fairly easily maintained. If I do something out of the ordinary I tire very easily and when I travel by train to visit family It upsets routine and I pay for it the next day. My nerve pain increases with stressful activities. I am lucky. I am on disability, I awake whenever I want, walk to my local coffee shop, chat for an hour and then return to watch television and be on the computer. I have this routine for 350 days of the year. I consider my energy like a sand dial. When I awake it starts and no matter what I do, by evening I'm usually run out of sand and if I overdo it I'm exhausted. I don't know if this helps at all as my foot numbness is constant and my infrequent bladder problems are minor

    1. Thanks for the response, Dave. Great similarities. My lesions are at T6/7 T7/8, and I am certainly handicapped, but YES, I know I push myself. I guess I always have… I was very much at a peak just before getting TM. I was a black belt teaching my own Karate class, and on the one hand this gave me a residue of muscle fitness, but on the other it left me very angry I could not get back to training. I have accepted the new me (really!), and I can only manage a couple of days a week of work, and then MY sand runs out. I guess I have taken on the writing stuff as a substitute.

  2. Your energy levels are amazing Graham! My lesion is in the base of the skull, but I have some nerve damage in sacral region/sacroiliac (post MVA Jul/11) and which 'revved-up' my underlying-condition-(TM). I can relate to your conditions! Do you have a 'specialised/LTV-cushion'? It makes a hell of a difference in my life! I couldn't sit in a car (to DRIVE it) for 18-months, because the physical-muscular-effort of pushing the pedals was giving me terrible shooting-pains and 'pressure sensations' in sacral regions. But, I must thank the wonderful staff of 'Professor-Tess-Cramond-Multidisciplinary-Pain-Clinic', for my rehabilitation this year. After a lot of physio/mindfulness-techniques/tai-chi/hydrotherapy between RBH & PCH I'm now driving! Even so, for me to be a passenger is uncomfortable. It's a feeling like a lead-weight being suspended from my anus, with every sensation of 'G-forces' w/cornering/braking/acceleration transmuted through my inards! (Mate, that's how I describe it).. Graham, is Your body trying to tell you something..? Ease back on the throttle mate ok. I think the fact you're spending a lot of time sitting in the same position. So much of your energy is spent in the CAR, so isn't doing you any favours either-(constant/posture/pressure points)? Cheers, Glendon Raisbeck.
    (p.s. I've 'favourited' THIS blog too, in a 'post' I did on my blog. Please check it out; << >> It's about my story of living with TM

    1. Fantastic progress you have made, Glendon. I am so glad our system has been kind to you. I will check out your blog. Thanks

    2. BTW, I recognise that lead weight business…. LOL

  3. Haven't had that issue, so I'm of no help on the physiological aspects. Sorry about that.
    I do relate with the exhaustion and deadness in the feet and legs. My lesion is in the cervical area, very close to the brain. Luckily I only have permanent paralysis in portions of both feet and calves. The nerve damage has wrecked my hands and arms, so my (semi-retired) career as a pianist is over though..
    Unlike you I'm still vacillating between the 7 stages of grief. Sometimes hourly heh.
    Was diagnosed with TM in August of this year and am busy reading absolutely everything available on the subject,
    Would love to read your book. Have a Nook and not a Kindle though. Is it available as in ePub format?
    Best of luck, you are a far busier TMer than myself.
    My father was a psychiatrist and I wish he were still around to help me research this disease.
    Going to poke around your blog now. Between working for my father during school breaks, my own long-time diagnosis of clinical depression and bi-polar disorder, and the TM your site looks quite inviting.
    Take Care

    1. I hope bits of the blog are helpful to you. Yes you can get Taking Charge as a simple 'pdf which should read OK on anything. Hope you get something out of that too.