Ok. So most my muscles are gone but lately I can't get from from sitting to standing. I have noticed this progress over time. I've also lost a lot of bowel control. The question is why??? If everything is the same, this should not get worse. For some reason I feel it is in the lumbar/sacral region. In my MRIs there have been problems awaiting to happen. But my fall rate is getting higher, injury rate higher, fatigue higher. This is insane. If I go too far walking (which isn't much), I can't keep my shoes on. I swear shoes are a hazard to quads/paras. It's the shoes, the path (unseen trips), and navigating tight spaces. When I go to the toilet I need to grab on to a wall to get up. I have been putting a lot of good energy in my body so diet is not the issue -- absorption maybe, but not diet. I worked so hard to climb stairs again. Now it is all fading. And today I got the worst spasms since the beginning years -- shin splints. Luckily compression leggings and socks helped. Also Baclofen. Because this is a slow decline, I'm assuming to assume reality. Time to prepare. Any insight or thoughts appreciated.
Hey outlier, I'm really sorry to hear about that. It sounds very strange! How old are you if you don't mind me asking? I don't think I know what your injury was and how it was treated but a general spinal cord injury should not worsen after getting surgery.
Hi Out Can't offer anything but just wanted to say how sorry I am that this is happening. I know how hard you have fought over the years to get where you are. I hope there's an explanation and a fix for you.
Outlier, I'm so sorry to hear that you are experiencing this loss. Sucks! But, have you sought medical assessment as to what may be going on?
I realize that we can tire of the blank look on specialists' faces after repeatedly asking what is going on and why, but it might be worth a try to see if there is an explanation for you. Could help.
Hey outlier , I'm really sorry to hear about that. It sounds very strange! How old are you if you don't mind me asking? I don't think I know what your injury was and how it was treated but a general spinal cord injury should not worsen after getting surgery.
I'm a C5-T2 posterior cord (midline dorsal to central canal) a nice little 5 inch hole. Cause metabolic or a demyelinating disorder (autoimmune). But I also did hard core ballet, which is the best sport for all kinds of reasons, but one of the worst sport in terms of later life effects. In terms of the central nervous system, sacral, lumber and cervical all get hit. You literally can spot someone who's done a lot of ballet based on MRI imaging. The cervical loses its lodorsis (curve) and becomes completely straight. The good news is you have perfect posture until the lumber kicks in.
Thanks everyone! Loraine: I'm going to review my last lumber MRI a few months back with my pain management doctor. I picked up things in the cervical MRI that their radiologist did not. But the MRI used is crude compared to other MRI machines. Plus they do more spaced out slices so a lot can be missed. I brought in my MAYO MRI to show him the difference. He was amazed because the largest part of my lesion was one of those missed slices (MAYO does very thin slices for that reason). So we'll see. But I have increased my exercise (part of the problem, maybe) and god, the spasms and fatigue have returned. It's so frustrating when people do not understand your limits.
Does anyone know a good article for care-takers that discuss all our issues? I'm going to the eclipse and staying with friends and I'd like to give then information before I arrive.