Hello samantha, I will look up what the doctors have diaganosed you with. I haven't heard of this before, so please forgive my ignorance. I have learned so much about conditions these past few years. I try at least to get a handle on what people have, by going to the internet. I will do some research in the next couple of days to see what I can find out. Today I have company coming over for the game.
I also want to say something about the fear you have about the condition getting worse. I have the same fear. I have degenerative joint disease, degenerative disk disease, and these arn't going to be getting any better either. I posted or vented this morning to Mark and Eva. They have such a spiritual center about them, I go to them for support. I get scared too as I don't want any more cervical fusions, I have had two already. I need two new ankles, and a toe joint will be replaced the end of the month so I can walk. I get frightened at how much more I want to go through. There are several more conditions I have, that I have to deal with too. All of it gets overwhelming at times for me as it does for many others on this site. What I have learned is that we are here for each other, and it is OK to tell about your fears and feelings, good grief all the stuff people have to deal with....
Even with my troubles, this site has shown me I am not alone to deal with my conditions. That in turn does help me to help others. It is very true, that so many suffer more than I do. It humbles you. I tear up when I read some of the posts that present. Hang in there Samantha, and I will be around, needing support just like you do. WE are not alone. ginnie