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Oh well, would have could have should have. It's nice to know, without a shadow of a doubt, what happened and have an MRI showing the damage to my spinal cord to back it up. Well not nice of course because it's a serious diagnosis and perhaps with mystery paralysis I could hop out of bed tomorrow. But it's nice to know there's a legitimate diagnosis.
But, how's the poem go... nothing gold can stay. Like I said my damage is in between mt T9 and T10. I was originally entirely paralysed below my waist. A few months after getting out of hospital and doing PT and swimming (mostly swimming and doing water PT on my own and with the fiance, the PT was clueless about SCI, mind you she didn't think I had one) I regained a small amount of motion, mostly in my left hamstrings, quad and hip flexors. Enough to slowly get up on forearm crutches. Everyone, myself included, was ecstatic. I was still in a chair 95% of the time but it was improvement! Got stronger but nothing else changed until the end of September when, with a whole lot of determination, I was able to occasionally wiggle my right toes and ever so slightly (it could be mistaken as a twitch most of the time) move my hamstrings and hip flexors. I also had a bit more bladder control. Still had a BP but to pee I just made I went very very often as I still couldn't really feel my bladder and I pushed with my hand on my lower stomach a bit. It went from "Yes I'll get better because most people are supposed to improve" to "Ohmygod I am going to get better!"
Then October hit. I still swam and did PT. School still stressed me out majorly but things with my mum had even improved. So nothing major changed. Except I couldn't move my right toes or knee at all, barely even my hip flexors. I then began to lose motion in my left leg, only have occasional jerky quad and hamstring motion, pretty much completely dead below my knee. I had a LOT of pain problems before and while they stayed the really sporadic sensation I had (numbness coming and going but staying low in my body) went away. It's now very consistent, I cannot feel anything to about my ankles then up towards my belly button sensation slowly comes back, but slowly. Mostly I feel pressure but I can't feel if somethings wet (weird I know) or pin pricks you get at the doctor or my shoes or clothes. I started having more potential pressure sore problems and not completely AD (I'm at the level where it's uncommon but not really rare like T12 or below apparently) but mild blood pressure spikes and flushing when there was something causing pain I couldn't feel. Can't pee on my own anymore :-( Getting on meds and cathing again. So pretty much I've gotten worse and it's a bit more than just a lull or a minor dip. It's just worse. I would say it's a mental thing because now that I have a diagnosis I'm back to fitting the SCI symptoms. But most of it happened before I got the MRIs done or the EMG results back that gave him his official diagnosis and when he found out the damage was much much higher than anyone originally thought. So it's not that.
My doctor thinks the virus may still be active in my spinal cord. He wants to do a spinal tap but is hesitant because, since no one has any idea what caused my TM (can be loads of different bacterias or viruses), he doesn't want to introduce anything or possibly compromise it. I'm getting loads of blood work done (bllleeeeeehh I have such a phobia of it I wish I could get put under for it, silly I know, but unfortunate you need an IV to get put under, defeating the purpose. Doesn't help that my last IV took 5 nurses and 3 doctors including a specialist an hour to get in in hospital, I'm a really hard stick. Sorry had to rant.) Hopefully that will pull something up. He's being optimistic and is pulling all the strings and connections he has to get me into Craig's outpatient, possibly inpatient if things get worse and he can find out why and stop it. He's really respected in Colorado, so waiting months to get into him this summer might be worth it to get into Craig quicker! But yeah he hopes some really specialised PT and rehab will help it and if the blood work doesn't find the cause that it'll just go away.
So because of that, and the fact school was not going well because I was still so sick and also had major problems with accessibility (that's another novel length post from me at a later date) I've had to withdraw. Luckily I get to keep my scholarship and am in good standing with the university, which is really good. I'd prefer to be in school when I can focus on just school instead of an ever evolving health crisis. I kept trying to trick myself into thinking I was like someone who was injured but now just had to get used to being in a chair. I had a hard time coming to terms with the fact I'm actually still very sick and I'm not copping out by taking some time off. I'm also frustrated that this summer when I approached the school about deferring a semester or two to address my health concerns, they told me absolutely not. Could have saved a lot of money, energy and grief, but oh well. Can't change that.
But back to my doctor. He's wonderful and nice and optimistic, but he's also a realist. So the other explanation (and what prompted me to go on and on and on like this until this point) for what caused the TM and why it's still changing... MS. And I'm going in for brain scans next week and the week after.
I don't really know how to feel. Obviously there's no diagnosis and he's trying to rule it out. But obviously there's a very real possibility, if not of MS, but of something serious that causing these changes. I felt like I was coming to terms with being in a chair and being paralysed pretty well. I've been struggling with not being able to ski "normally" or teach my AB kids full time like I was planning on, but in the scheme of things I've been very lucky and was going to be okay. Then I thought I was improving and might be able to walk! Then it was back to okay, SCI, worst case, I'm completely, well, complete. It'll be hard but I can deal. SCI is scary and horrible, don't get me wrong, but generally there's a baseline. You (generally) hurt an area and have certain function there. You might get better you might get a bit worse if another injury or vertebrae collapse or something happens, but generally you have that injury then the rest of your life is spent dealing with that injury.
MS, or some other degenerative disease, scares the shit out of me to be honest. The idea of continually losing something and having absolutely no control over it, like your life is just a bunch of sand slipping through your fingers no matter how hard you grasp on... frightening. I've always been pretty type A, I like to problem solve and be on top of things. It's almost why I think I was able to deal (or have been able to so far) with being paralysed relatively well, because it was like... I can't use my legs now. What can I do? What do I need to change? Done and done, sounds like a challenge and I like a challenge. Also the biggest part is as a para, not only do my arms work but my brain is all there. Well as there as it was before I got sick ;-) With MS you're affected cognitively. I think to write and think and create and solve puzzles and problems... I don't know what I'd do losing my cognitive abilities at all, and worse off, when you do you're too far gone to do anything about it. All I can see is a really bleak future where I'd become a prisoner to my dysfunctional body and mind... On top of that I'm only 23, I'm still pretty young.
I'm trying not to think that and hopefully everything will be okay. I just had to get this off my chest. If anyone is still reading... well thanks for listening, I really appreciate it.
Edited by KayDub, 31 October 2011 - 03:31 AM.
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Its a nightmare sometimes being pushed from piller to post main thing is to keep ones spirits up 
