OK, so the past week I had an MRI, another sleep study, a Spinal tap and tomorrow is another physical evaluation. While I know that I cannot do much of anything, I am very nervous about this. All of the tests always come back normal or something close, but obviously I am not OK and this doctor knows it. This is the only thing really holding me together. I managed to escape the spinal headaches from the Spinal Tap, at least I think I have, which is great, but what I didn't have before (probably because I was paralyzed and couldn't feel it) is a very severe backache. Not just a normal one, one that goes from the top to the bottom of my spine. I guess if I was a spine, I would not like a great big needle jammed into me. I'm sure this is normal, but not comfortable. My hope is that going through all of this will find something and give me some answers. I can't trust that it will though. I have seemed to have lost my ability to not react when I get one of these "everything came back normal" answers. A little worried about myself. Anyway, whatever.
I do know for sure though that the sleep apnea I have is completely neurological. There is nothing obstructing my airways. Getting my tonsils out wasn't a total waste. The scary part is that it's "simply", don't you love that word "simply" , that my brain tells my body to stop breathing. No real way to treat this except with a breathing machine at night. This doctors office has been wonderful to help me find a way to make this work. The last one pretty much said, "Here is your machine, Good Luck". I had problems consistently and they would never help me. Anyway, maybe this will help me a little. After the last test, the guy doing said he thinks I got some much needed deep restful sleep I probably hadn't had in years. He was right. I felt pretty good the next day until I had to walk too much and felt like crap when I went to bed. Oh well, such is my life.
Well, I'll try and update some more after I get some answers from all of this. Asking that all of you cross your fingers, and toes and pray and whatever else you can think of that this might all go through for us. We really need things to go better for us/me. Thanks