Wow what a post.
This is how I see you. I see a person who is in a lot of pain and is looking for a diagnoses whatever it might be. I have AS but I also have something else going on with a lot of pain that the doctors don't seem to have an answer for me. It is very frustrating for me that the docs dont know whatelse is going on in my body. I am going to a neurologist today hoping to get some answers. I have only been fighting this new pain in my body for the past year so I cannot even imagine what it must be like to have been going thru this for as long as you have.
Have you ever seen the tv show mystery diagnoses? I think that is the name of it. anyway there are a lot of people who have gone to docs for many for years getting the wrong diagnoses to finally get the right one.
It surprises me that Mayo could not find the anwsers you were looking for. I might have missed one of your posts but did they give you any ideas or a diagnoses at all?
I wish the best for you and hope that some day the doc will say to you a-ha this is what is going on in your body.
Big hugs
Raquel
