I've been a quad for 21 years.
Eight weeks ago, two strange occurrences began happening in my body: the muscle spasms in my legs dramatically increased and my nights became sleepless due to the sensation of needing to urinate. After about two weeks of calling help to come over in the middle of the night to check my catheter and leg bag, I learned that my new nighttime “pee feelings” were happening even with no catheter problems or no full bladder issues. I contacted my urologist and checked for kidney stones and/or a bladder infection. I had no kidney stones, but I did have a bladder infection. After two rounds of antibiotics, the infection was gone. During the course of those couple of weeks, these annoying nighttime “pee feelings” just about stopped. I had hoped, though, that they would have completely stopped after the infection was gone. I then contacted my general doctor to have some blood work done. All of my numbers turned out perfect. I then saw my mom’s doctor, a Tibetan doctor who studies pulse points. He said that I was in excellent health and could not find any problems.
All three doctors’ news was good, but I still was having intense spasms and occasional nighttime “pee feelings”. I write “pee feelings” in quotes, because yesterday I realized they are not exactly pee feelings. I have always called them that, because I get those feelings when I need to pee. But technically it is just mild autonomic dysreflexia. I get cold and slightly sweaty when I have a full bladder. But yesterday, when I was stuck in bed trying to avoid getting a pressure sore on my bottom, I noticed that I was getting my “pee feelings” every time I was lying on my left side. This made me think that maybe these feelings had nothing to do with my bladder, but maybe there was something else wrong and it was causing dysreflexia.
So that's where I am now. Three doctors have told me that there is nothing wrong. I have changed nothing in my routine or diet. But still I have these symptoms. Does anyone have any suggestions for me, please?