10 replies to this topic

[Lucydog]

Ok, heres the scenario... a person contacts you via the internet, a forum, whatever, tell you that they are a mid level para, or thereabouts. You chat for a while about this and that and then a few months later, this person tells you that they have had a sudden downward turn of events physically and that they are losing or have lost the use of their arms/hands etc. Doctors are baffled, the best brains have no idea whats the problem. Before you know it the whole thing may turn terminal..... Sounds familiar to anyone?

Ive come across this situation about 3 times or so. Every time Im very suspicious, then beat myself up about it and then still end up being suspicious. Am I right to be? Is this a likely scenario, are there likely causes I dont know about ( apart from a brain tumour which is pretty rare)or are there just more pretenders than we realise? Do I just have MUG written accross my forehead? Actually Im not one, but I worry jumping to the wrong conclusions.

Thoughts please, Id be interested to hear what people all think.

cheers
L

[russ1]

It's just possible it could be due to a syrinx but to be honest I suspect it's much more likely it's the pretender scenariothat you suggest

[jetski]

Hi Russ1. Funny, I was just in a conversation with Dr. Wise Young and we were discussing this same topic. His conclusion was that a para could be classified as walking quad. Specifically if the para was a thoracic with traumatic injury.

Maybe this helps and maybe it doesn't.

PS. Russ, you were correct in your assumption that my injury was more than a T-1 & 2. It turned out to be a C-7 which explains the condition of the hands.
Thank you.

jetski

[KarenFerguson]

Sounds totally fishy to me, especially the whole: "Doctors are baffled, the best brains have no idea whats the problem". But you never know ...

[cate]

Sounds suspect. but always a poss it is not. I would go with your gut feeling. I do not understand why somebody would lie, but we do know it happens, are they trying to get info or what from you,
Nowt so queer as folk!!
Cate

[wheeliebear75]

I think it sounds a bit fishy......but hey just me. I suppose there could be some reason for a person's condition to get worse.......but it's pretty rare; even more rare that like Karen said "the best minds are baffled". THAT is the part that would make me suspicious.......he\she can't tell you why. Myself for example.......my SCI didn't get any worse......my pain has gotten worse though because of discs that need are needing to be replaced and arthritis setting in.........but there's no mystery and I didn't suddenly loose the use of something I had use of before. I'd keep my guard up if I were you.

[qbounce]

This is as good a time as any to post what's been happening to me:

For almost 3 months now I've had symptoms resembling a syrinx. Here are mine:

Losing strength, function in arms and atrophy in forearms, with fatigue
Injury level feels higher in chest
Heat through arms and in head
Pressure in head and ears
Ringing in ears
An electrical buzzing like sensation throughout body
Major fatigue in body after being in w/c for a few hours

I have no pain, though. Maybe because my injury is complete, I don't have that kind of sensation.
I've had a muriad of tests don: blood work, MRI at injury site, EKG, Echo stress test on heart, with no results.

I just completed another MRI and CT Scan on the brain and upper spine and will see 2 doctors next week for those results.

The Neurologist under my insurance told me of another patient who had scar tissue that built up around the injury site, and "CHOKED" the spinal cord, caising the injury site to raise. He seemed to think because I was in front of him that I may have the same diagnosis?! F*@KING DOCTORS!!

The second doctor, a SCI specialist, I'm paying for out of pocket for an experts opinion. I've got to take matters into my own hands if I'm going to get an accurate assessment of whatever this thing is. I've thought it was a syrinx all along, but I'll post with you all next week when I have the results!

(BTW, Lucydog, this stuff doesn't just happen over night . . . it's a slow progression from a buzzing sensation through the body and fatigue, to numbness in arms, then to a weaking grip after a month. But, of course I'm already a quad. Ask how high the injury level is, then you can make an educated guess as to how quickly this persons symptoms are progressing. Even ask what they're feeling, because the body doesn't simply loose sensation. The nerves aren't wired right anymore, so spasms, tingling, heat, all play into the equasion. It isn't just a quiet loss of sensation).

Edited by qbounce, 04 July 2008 - 06:54 PM.

[edlee]

Sounds a bit hinky to me, too.

But,, hell,,, if he's not asking for money,,,,it's really no big deal.

I read an average of four books a month,,,, If someones wants to email me fiction,,,, and I find it interesting,,, does it really matter ????

I have become emotionally involved with some of the posters, here, who turned out to be pretenders,,,,and was a little put out with them for a while.

I got over it,,,,and,, I've actually missed them. As long as they kept their story line straight,, it was an enjoyable read.

If all they want is a little conversation and a bit of sympathy,,,,,,I'm okay with that. If it helps them in some small way,,,,why not.

We all like to feel that someone cares about us. Maybe this is the best they can do.
ed

[Kwag_Myers]

I think the real lesson here is not to chat with Lucydog too much. I mean, maybe she has that affect on people. I know I tend to make little kids scream or cry. Even some adults. And that was before my SCI.

[Nick's mum]

Hi Lucydog and all,

Omg, I have just replied to an original post of mine with very similar words. Yes, doctors are baffled at Nick's increase in spasticity!

Ulla x

[Tinbasher]

Interesting.

I chatted via yahoo for years with a "vent dependent C2 quad" who's "dragon dictate" started to misspell words (??). Not get the wrong words which I know is possible but to mkae tyopgaraphicle eros (like that )

I initally gave them the benefit of the doubt thinking they might have been using a mouthstick of something but they kept telling me it was dragon. It just felt wrong.

T