2 replies to this topic

[KayDub]

Originally my paralysis and muscle weakness was diagnosed as caused by blood clots that affected my muscles ability to function. I got sick about 2 months ago and have been in a wheelchair since, completely unable to use anything below my knees (minus those random foot spasms... whoops! there goes my flip flop... always freaks my friends out, my partner thought I tried to kick him with it on purpose the first time).

Anyway saw a new hematologist today who was AWESOME. I'd had one who wasn't bad in hospital in Perth but they had to medically evacuate me back to CO where my family currently is so he was just trying to stabilise me. As soon as I got to CO I saw a new woman who I thought was good, but in reality she was awful. She never once directly answered my concerns about paralysis and pain. After I started experiencing lack of feeling starting in my toes and moving up as well as the lack of motion I called again concerned. A day later she sent me for an emergency ultrasound (the night of my birthday... woooo hospital party) but I was never allowed to find out the results because they radiologist couldn't get ahold of her and wouldn't talk to me without her first.

So I found another guy near where I'm living now. He was so great he made me feel better about the fact that I won't die of blood clots that don't seem to go away and that they've caused a lot of scarring in my legs. He answered all my questions and really gave thorough answers and even added some very detailed hypothetics which made me feel like he cared and was giving it a lot of thought.

But then of course there was the fact that after a bunch of grueling PT I've gained some movement in my left leg and as of today (hooray) have been able to slowly wobble around on crutches (painfully without a lot of motion not like when I had a foot surgery and was a beast on crutches before I got sick). I'm still mostly in my chair but oh is it nice to be able to get into our downstairs bathroom and not be carried to the car.

The thing is now he's pretty sure I have some extensive nerve damage (from the bottom up as opposed to SCI down) from the infections and previous injuries. Even if it improves it seems like a permanent thing. So it's nice to know I'm not dying of a blood clot that has messed up my nerves, but now my doctor thinks my problems began long before (I had an L 5 nerve block in college while running track after they accidentally sliced and damaged some nerves in my foot taking our some hardware from a fusion). He thinks the infection that almost killed me made it worse.

It seems like each day with good news comes with some bad. Oh well, it'd just be nice to know for sure what's wrong so I can make sure I'm doing the right things to improve the situation as much as I can and work on adapting appropriately. Did anyone else have this problem?

Edited by KayDub, 18 July 2011 - 09:58 PM.

[Ginny]

Not really, Kay. My condition was caused by an injury that was pretty hard to miss. I guess if I had to say that the doctors were off on anything, it was in not giving me an accurate gauge at how long it might take to recover. I was in a wheelchair for 4.5 months because of a badly broken leg, in addition to the SCI. When they told me I could start putting weight on the leg, I thought I'd be hiking by the end of the week. Oh yeah, wrong on that count. I took me months to get my strength back and stretch enough to stand up straight. Even now, I have numb feet and shins. This may be what they had anticipated from the start, but they sure didn't give me any clue. It's been a bit of feeling in the dark to figure it all out. This site and the folks with experience have helped with the reality check.

Also meant to say tham I'm glad you got up on crutches! That's a positive step (no pun intended) for sure! Even with the newest diagnosis you've received, I have hope that you will recover your mobility!

[pinkcloud]

hi kaydub

yeah, i in the same boat as you, the thing is.....

not many consultants actully agree with each other about anything, over diagnosis. made.

They listen to the symptoms, if there are lots, prioritise what they think the most important (blood clots are scary mother fecker things) and then eliminate symptoms from their enquires.

We just got to remember..doctors can only be real exprienced in stuff they have com accross and or heard about. Imagine just how many symptoms mimic others? And let alone how many disorders there re out there.....

maybe you could write a quick letter to the doctors you saw who mis-diagnosed you..educate them a little.

If we dont tell them...they wont know.

ohhh and get yaself a copy of ya consultans letter from your GP to keep to take along to emergency consultations too..even though these two can get ignored..at least you in a safer area to get them to believe you.

yeap its usually bad news...yet not knowing about stuff dont mean it done exist until you get more diagnosis just treat ya ody with ya natural instincts..i get something new all the time..then some of our longer sci go - ohhh i've had that years and i cope with it like this......i cant express enough how that reassures/settles the nagging mind we experience at times