The problem is... is that each and every one of us is very very different so trying to figure it out is sometimes close to being impossible. Fortunately, I haven't been able to figure out a great majority of what is going on with me.
The one thing that had me clueless that started in the late 1980s was symptoms that were abdominal cramping (not pain... just really bad cramping) and severe spasms - both of them very very bad. So I thought it had to be something to do with my gastrointestinal system or something in that area so I had test after test after test after test with everything turning up negative. Then one day after my ex common-law husband of 13 years and I took his new truck for a ride (with him lifting me in the passenger seat) and drove up to my sister and brother-in-law's house. I did not take my chair for obvious reasons (no place to put it and too heavy) so we were just driving around and stopping by my sister's house to show them his new truck. My sister came around to my side of the truck where I was sitting and after a little bit she said "Are you feeling okay? I said "Yes, why?" Her response was "Because your right pupil is really dilated." In short, after 4 1/2 years of going through hell and trying to work with my symptoms and then finally something else (my right pupil dilating and staying that way) I finally thought and said to myself "That's it ... I need to find out." So I called Craig Hospital and one of their neurosurgeons called me back. I described what was happening and then finally my right pupil dilating so he said to have my physiologist prescribe a MRI to be done on my spine because it sounds like "Post Traumatic Syringomyelia." Way back then I never heard of that so I was scared to death. The MRI confirmed that I had a lengthy syrinx inside my spine. Because my symptoms were so bad I chose to have surgery with a shunt put in. My whole story around that as awful and having this condition is hell itself by making my body SO MUCH more sensitive to anything. Re: when I am really cold... I can tell the difference of when I am terribly terribly terribly cold and the feeling I get shortly before shivering when I have a fever that has always been an indicative for me with it being a UTI. You would have to be me to understand the difference. But, again, our bodies change and with spinal cord injuries we are like other people and we are all different so sometimes you can get to the bottom of it and many times not be able to. Me shivering and being cold has never been a form of AD or mild AD. Greg, you are always cold most often so I am guessing this is different. Best, ~Lori On Fri, Oct 2, 2020 at 6:49 PM Danny Hearn <[email protected]> wrote: > Greg....I get tht cold freezing thing a lot.......But when it is like you > described---with the shaking and can still feel heat coming off your body, > it's been a form of mild A.D. always with me. Mine in the past was usually > a bladder infection, When getting any type of A.D. it can be hard to figure > out sometimes, I wish you luck....Keep us informed if you find out cause. > Dan H***- > > On Friday, October 2, 2020, 08:25:08 PM CDT, Greg <[email protected]> > wrote: > > > I get soooo frustrated at night. I get freezing cold a lot, but at night I > get feeling so cold I shake uncontrollable. Like my arms are in icewater. > More and more heat / blankets makes it worse. I sware I'm cold... Yet as > soon as I get up, it goes away. My temp doesn't change, yet I'm shaking, > and feel the heat coming off my body. Over heating while I'm up just makes > me feel hot > > Only 2 things I can think of: > Either its a mild A.D. > Or its my arms get so tight, its cutting off blood or nerves? > > Any Ideas? > > Greg > -- “Petting, scratching, and cuddling a dog could be as soothing to the mind and heart as deep meditation and almost as good for the soul as prayer.” ― Dean Koontz
