Hi Harjit,
Sorry, only just seen this was for me - wasn’t purposely ignoring you!
My lesion was actually actually at T12, or possibly at T8, depending which MRI report you believe. Spinal cord lesions tend to be less distinct on MRI than brain lesions, so I’m not really sure which location was correct, or whether I had one really long, thin lesion, spanning several vertebrae.
Whether it was really T8, T12, or spanning the two, it’s lower than T4 (they number from the top) and either is unusually low for an MS lesion, as they are more commonly found in the cervical or neck part of the spinal cord, not the trunk.
Not that there’s any special significance (that I know of) to them being lower - it doesn’t mean the MS is more serious or anything. Just a slightly atypical pattern.
As for symptoms - well, might be a little too much info here (sorry!) - but numb intimate area, and rather dulled sensation to about the thighs, I’d say. But more profound than that, completely numb feet - they moved fine, they worked fine, they felt nothing. I could have done the firewalking trick, or walking on broken glass no problem. I might have injured my feet, but they wouldn’t have reported any pain.
If I touched them, my fingers could feel my feet, but my feet couldn’t feel my fingers. There was no problem with circulation, as my feet were normal colour, and warm to the touch, but they still felt numb with cold! I described it to the neuro as: “Like having concrete socks on!”
Although mobility was mostly unaffected, I had to be very careful, e.g. on stairs, as I couldn’t feel my footing, and had to keep looking down to check what was happening. I was also quite weak and shaky, especially after sudden exertion. Once, whilst still unrecovered, I had to run for a train at Birmingham station, and got stuck halfway up a flight of stairs, as my legs suddenly decided they weren’t doing it any more. I didn’t collapse or anything. Just had to rest and hold onto the handrail, and wait for my legs to cooperate again (had missed the train, of course). I also had to be careful not to step into a scalding (or stone cold) bath, as I’d lost temperature detection, too, so dipping a toe wasn’t a safe test.
Oddly, none of it really hurt.
I did get some neuropathic buzzing sensations in my leg. These were annoying, but not painful. I actually timed one of them, and it was doing it for about three seconds every eight seconds - mechanically regular. I thought it must be related to breathing, or heart rate, or some other bodily rhythm, but I experimented with lying on the floor and slowing my heart rate right down, and holding my breath, but nothing made any difference.
Quite funny, in hindsight, doing experiments on my buzzing - I must have been quite hard up for something to do!
I now understand you can get drugs to calm this down. I wasn’t offered them at the time, and not sure if I would have bothered anyway, as it wasn’t really a pain, just an odd thing.
I’ve had tingling and numbness in my hands on waking for some years now. I’m sure this is part of my MS, but not caused by the T12 lesion. An important rule with spinal cord lesions is they ONLY cause symptoms below the site of the lesion. They couldn’t operate upwards to give you a headache or blurry eyes, for example (MS might cause those things, but not from a spinal lesion).
My spinal cord lesion or lesions were too low to be interfering with my hands, but yours, at T4, might do I think.
As far as what you can expect - from this particular episode, you’ve probably already had most of it, and should be beginning to recover. IF you had future episodes, you might have completely unrelated symptoms to any you’ve had so far, because it all depends where the lesions form - which is random. But cross that bridge when (IF) you come to it. A second episode might be months away, years even…or never!
Tina
x
