Re: Transverse myelitis

i have Bi-lateral Transverse Myelitis,, longer way of saying ''both legs''

if i get a cold or flu,, or if i exhaust myself from overactivity,,, i can
feel it right away in my legs,,, as a loss of function,,, it can be mild -
from just sore painfull tired legs,,, that feel like i just ran a
marathon,, to total paralysis,,, lasting at most 2 weeks with steroid IV,,,
taken immediately,,

as an avid sk8border and snowboarder all my life having this transverse
myelitis totally sucks,,, keeping me from ever being able to ride the way
and as hard as i did,, no more double Black Diamond runs or ''out of
bounds'' ,, or backcountry hiking,,, or cliff jumpin,, or 1/2 pipes,,

this year i tried something different,,, Sledding,, snowmobiles,,, one of
my new specialties is SITTING around the house,, so what could be easier
than sitting on a sled and buzzin around the mountains in the snow,,, just a
nice relaxing tour of the woods,,, sitting on a long couch with an engine
under the hood,,, now i do push the limit , jumpin the sled !!!! but thats
easy when you can just sit down right after doin it,,, , i like the fact i
dont have to walk anywhere,, unload the sleds and go right away,, never walk
more than 10 feet to get on,,, saves my leg strength doing this and i can
have fun and enjoy the outdoors,,,

FYI i wear an avalanche locator device and we bring an altitude measuring
GPS device,, for travelling up BC mountains alpine areas,,,

''adaptation'' seems to be a key word with this disease,,,

bobbyD





"James Bray" <james@xxxxxxxxxxxxxxxxxx> wrote in message
news:dpoer6$q9r$1@xxxxxxxxxxxxxxxxxxxxxx
>A year or so ago, last October, I felt flu-like one night and had
>considerable back pain. Within the space of a few hours I lost all
>movement in my left leg and lower left torso.
>
> Fastforward a few days and after some time in hospital, I was told I had
> Transverse Myelitis. I had MRI, Spinal Tap and blood tests - all came out
> negative for MS. I was told I did *not* have MS (although I understand
> there is a small chance of it developing later anyhows).
>
> Fastforward to now. I have not had any further "incidents" or flare-ups
> that I'm aware of, although I still suffer from a number of residual
> problems - mainly pain.
>
> However, on the bright side, I am walking properly and back at work. In
> general, life has returned to normal.
>
> As TM is quite rare compared with MS, I just thought you might be
> interested in "my story"
>
> James
>
> Scotty wrote:
>> Hi all.
>>
>> I was recently told I had this condition, and I'm waiting for the next
>> step (an appointment at the MS clinic). I'm discovering just how slow the
>> wheels turn here in our vaunted Canadian health care system. I first went
>> to my doctor in August about weakness in my right leg. I finally got an
>> MRI just before Christmas after my feet and legs went numb, and since
>> then the only contact I've had with my neurologist is by telephone.
>> Apparently I have to wait a few weeks to see the MS doc. Anyways, I've
>> read that TM is often the initial diagnosis for MS, so I thought this
>> would be a good place to ask some questions.
>>
>> I first noticed weakness in my leg about a year and a half ago, and the
>> neurologist is pretty adamant that it's related to the numbness. Is this
>> normal? Don't TM symptoms usually progress quickly to a peak? I have a
>> bunch of other things going on, as well, that may or may not be related,
>> but the timing seems pretty coincidental. I have this intense itching on
>> my scalp and face, so intense that it often hurts. When it first started,
>> just touching my hair nearly drove me up the wall. It started the day
>> after the numbness in my feet. Both my GP, and neurologist shrug about
>> it. The MRI showed a lesion in my neck (the doc couldn't remember if it
>> was more than one or not), but my brain was normal. Do brain lesions ever
>> get missed on MRIs? There's something going on with one of my eyes, too,
>> but I think it may be just a happy coincidence. I often wake up with a
>> film over my left eye, and need eye drops to clear it., and recently I
>> started being awoken by someone jabbing a hot poker in it, or so it
>> feels. I've always had a bit of a rough time sleeping (I'm a recovering
>> alcoholic, and insomnia and alcoholism go hand in hand), but recently
>> it's gotten much worse. Lots of little things that may or may not be
>> imagined or stress related, like light-headedness (hard to describe, but
>> kind of like I'm high or something), short term memory seems to be
>> disappearing, and taking my libido with it. I also have a constant
>> headache, just in case I wasn't miserable enough. My back has been
>> killing me lately, too, but when I first went to the doc about my leg, I
>> got a lumbar x-ray and found I have arthritis in my spine (apparently
>> unrelated to weakness/numbness). Do any of these symptoms sound familiar
>> (especially the scalp and eye things)? If so, is there some kind of meds
>> that will relieve the itching?
>>
>> In my whole life I haven't been to a doctor more than a few times until
>> recently. Now I'm thinking about reserving a seat in the waiting room.
>> Problem is, my family doctor isn't an expert in these things, and
>> although he's sympathetic, he isn't terribly helpful with my questions. I
>> guess that's what specialists are for, but I'm getting a little
>> frustrated with the wait.
>>
>> Scott


.

Relevant Pages

  • Transverse myelitis
    ... I first noticed weakness in my leg about a year and a half ago, ... The MRI showed a lesion in my neck (the doc couldn't remember ... wake up with a film over my left eye, and need eye drops to clear it., ... Now I'm thinking about reserving a seat in the waiting room. ...
    (alt.support.mult-sclerosis)
  • Re: Transverse myelitis
    ... Within the space of a few hours I lost all movement in my left leg and lower left torso. ... I finally got an MRI just before Christmas after my feet and legs went numb, and since then the only contact I've had with my neurologist is by telephone. ... I first noticed weakness in my leg about a year and a half ago, and the neurologist is pretty adamant that it's related to the numbness. ... I often wake up with a film over my left eye, and need eye drops to clear it., and recently I started being awoken by someone jabbing a hot poker in it, or so it feels. ...
    (alt.support.mult-sclerosis)
  • Re: Transverse myelitis
    ... Leg is probably up to it now, but I dont think I could withstand the increase in pain. ... I finally got an MRI just before Christmas after my feet and legs went numb, and since then the only contact I've had with my neurologist is by telephone. ... I first noticed weakness in my leg about a year and a half ago, and the neurologist is pretty adamant that it's related to the numbness. ... I often wake up with a film over my left eye, and need eye drops to clear it., and recently I started being awoken by someone jabbing a hot poker in it, or so it feels. ...
    (alt.support.mult-sclerosis)
  • Re: Statins or lumbar spinal stenosis??
    ... >>> There are causes of lumbar spinal stenosis other than bone spurs. ... leg or foot on the affected side. ... >>> spinal nerves, leading to numbness, tingling and weakness in your legs, ... > described the MRI results to me briefly over the phone. ...
    (sci.med.cardiology)
  • Re: Transverse myelitis
    ... > went to my doctor in August about weakness in my right leg. ... > my scalp and face, so intense that it often hurts. ... > wake up with a film over my left eye, and need eye drops to clear it., ... The scalp, eye, headache and maybe even spine might fit shingles ...
    (alt.support.mult-sclerosis)