acraw All American 9257 Posts user info edit post |
After ruling out many things, i.e. MS, a close friend of mind, whose sister is in ICU and unable to breath on her own, has currently been diagnose with transverse myelitis. She is currently paralyzed from the neck down.
The incident happened to suddenly and abruptly within an hour of feeling tingling down her left arm. No known recent vaccinations or allergies.
Does anyone know more than what Google can inform? Any personal experience? What else could it be if not, TM? This is the first case they've seen in this small hospital in Kansas City, and they're still doing bloodwork and looking at national databases.
What a scary time for the family. 9/30/2008 9:19:54 AM |
se7entythree YOSHIYOSHI 17377 Posts user info edit post |
with the tingling down the left arm comment, my first thought is stroke.
my mother has a coworker who had a very rapid onset of myasthenia gravis. she went from walking around normally to unable to walk and intubated within a week. they did an emergency thymectomy but so far she is not much better, even though her thymus was grossly enlarged. she's currently still hospitalized at UNC, on super high doses of steroids, mestinon, and cellcept, but still unable to breathe on her own. when you mentioned trouble breathing, i thought of MG, but most likely only because i have MG and what's going on with my mom's coworker.
if it is TM, then it's an immune response (as you can see from any google result) due to a virus or allergen. i'm not a doctor but i would be treating the inflammation with steroids as well as an immunosuppressant, if she's that bad off. immunosuppressants are big time serious drugs with serious side effects (like those used for organ transplants), but can help in cases like this and MG (my experience with cellcept).
[Edited on September 30, 2008 at 9:49 AM. Reason : ] 9/30/2008 9:48:35 AM |
TheCapricorn All American 1065 Posts user info edit post |
I had a friend who was diagnosed with the same thing. He basically went numb below his mid-torso over a day or so. They pumped him full of steroids and he was fine; until he was diagnosed with MS a year later after the right side of his body started having wierd spams.
If they catch it quick enough, I think there is a good prognosis with high-dose steroids. Good luck to her. 9/30/2008 2:14:07 PM |
acraw All American 9257 Posts user info edit post |
She has sensation now but they come and go. So no real progress yet. But I guess something is better than nothing.
I've read up on this stuff and simply put, it is a variant form of MS. I guess any kind of demyelanation would be considered that. But a careful diagnose is still needed considering MS has broad spectrum of symptoms.
And in other words, most will eventually develop MS. 10/7/2008 7:50:44 PM |
Aficionado Suspended 22518 Posts user info edit post |
pm lewoods 10/8/2008 12:01:03 AM |
brainysmurf All American 4762 Posts user info edit post |
plasma pheresis
we dont see it often here in the Neuro ICU.... we will get a case every once in a blue moon
we tend to get more myasthenia crises and guillain-barre cases.
(outside of our ususal strokes, head bleeds, and craniotomy patients) 10/8/2008 1:17:51 AM |
se7entythree YOSHIYOSHI 17377 Posts user info edit post |
plasmapheresis may or may not help. its benefits can last anywhere from a week to a couple of months. i can only speak from the MG side of things, but it's effective but not as a long term treatment. for me its effects lasted about 6 weeks after going to treatments 3 times a week. it did my mom's coworker (previously mentioned) no good at all. it was a miserable experience for me and i don't think it was really that beneficial in the long run (since i just ended up having surgery anyway).
that said, it's probably worth a shot if they think it might help at all. 10/8/2008 8:53:45 AM |
SaabTurbo All American 25459 Posts user info edit post |
Oh wow, that is terrible. I hope your friend is able to fully recover. 10/8/2008 9:19:13 AM |
brainysmurf All American 4762 Posts user info edit post |
at duke at least for MG crises.... getting pheresis is our standard of care.
also for nmda antibody patients
sometimes it take multiple treatments 10/8/2008 9:20:55 AM |
acraw All American 9257 Posts user info edit post |
She died on Oct 13, 10pm. This was a shock because she told me things seemed to turn around; that they planned to take her out from ICU. But around 10 pm, she was just unresponsive. I didn't really ask much else because she was so distraught when I called her last night.
A death like this is so difficult because no one saw it coming or don't understand why it happened to a healthy 23 year old. 10/15/2008 10:51:02 AM |
acraw All American 9257 Posts user info edit post |
From what I was told, they did do pheresis everyday. But I guess that didn't work. 10/15/2008 10:51:41 AM |
se7entythree YOSHIYOSHI 17377 Posts user info edit post |
oh wow. i'm sorry to hear that 10/15/2008 1:21:00 PM |
brainysmurf All American 4762 Posts user info edit post |
im very sorry to hear that 10/15/2008 3:22:13 PM |
benz240 All American 4476 Posts user info edit post |
sorry for your loss.
did they rule out Guillain-Barre? the course sounds kind of like what you described - rapid paralysis (usually ascending) that ends up with someone on a ventilator. it's usually post infectious - did she recently have an infection like a viral upper respiratory infection or something?
another thing i'm sure they considered was a vertebral artery dissection, which would end up with basically a brainstem stroke...
[Edited on October 15, 2008 at 6:13 PM. Reason : ] 10/15/2008 6:11:33 PM |