The other topic is getting rather long, so I started a new one.....
Thanks heather *hugg* I did want to tell you everything, but I hate to dominate chat like that. So many wait all week for chat night that I don't like take up everyone's time. I have been on amitriptyline for a long time (3yrs now?). It was increased by 100mg. I have been sleeping around 5hrs a night this last week. A few times about 4hrs. From what I can remember I am only waking 3 or 4 times. For water and to use the restroom. That is a big improvement for me. I am waking in quite a bit of pain. I wake up around 430am. Take my meds and just sit for the first 30 to 40 mins, drinking coffee. Then when it finally looses its grip, I get up to make breakfast buffet.
Day time is getting a little easier. I am having many afternoons at level 5. Long stretches of time too, I would say around 6 to 7hr stretches. The.. fog is a struggle. I am trying so hard to become accustomed to it. I know I am running out of options and I am doing my best to work with what I have got. It is hard to become accustomed to my pain / muscle medication being doubled. I am very concerned about my leg still collapsing, but it is easy enough to get assistance with walking.
I think they are still holding out hope that a cause can be found. They are reluctant to label me Idiopathic. It is because, I think, that it is rare that a fully mature adult begins progressive deformities. Let alone for such rapid progression in 4 years time. I do not see that they have anything left they can possibly test for. The last set of genetic panels done over summer/fall 2010 were costly and should have eased their minds. Still they are reluctant. So, the longer I can wait before seeking surgical solution, the better. Of course the time just isn't right with regards to my family either. New home, the bees being so little and needing help it just isn't the right time. Though if things get much worse we wont have any choice. I must admit that I still pray that one day they will be able to put all the pieces of the puzzle together. So many of the recent problems have no known cause. I always wanted to be unique, though this is not really what I had in mind...
I will let you know how all that testing goes. I got everything done that they asked of me. I still don't understand what the rush is about. Had they not needed the MRIs of each section of my spine, they never would have known about the "mass". I have no clue if they plan on doing anything with regards to the kidney function and creatine levels either. I suppose I will find out soon enough. I must admit it really isn't on the forefront of my mind. I have so much going on with my spine and various other problems that I just don't have time to really think about the other stuff.