Oh dear, cocked up my reply there...
I was going to continue...
I can remember being in "hell" as you put it, when I had no DX. I had symptoms which were crippling me and taking over my ability to function in my job and personal life, and yet no-one knew what was wrong with me.
I could not understand how my symptoms could be so extreme and agonising with no explanation being offered to me?
How can you get better if you do not know what is wrong with you and what will either help you or make you worse.
It's very frightening and you feel very vulnerable and out of control.
But even with a DX it can still be a minefield.
My AS went into remission for a long time and when it hit back I had great trouble recognising what the problem was. So often, I either have symptoms and don't realise it's my AS or I put things down to AS and it's not that.
It's all very confusing.
The main feeling I have is if anyone needs support we should try to give it.
