Hey Scott Agnew, sorry to hear you are having this problem. I know there are others who have been dealing with it here on the Forum, but can't seem to find the thread that talked about it. Hopefully someone will come along shortly who can give you some advice. I did a brief Google search and there are many articles on the condition....one was the British Medical Bulletin which was very detailed....sadly, doesn't paint a very good picture....I am suspecting that you have presented with some nasty symptoms....I hope your specialist will be dealing with you in a quick, kindly manner. Just wanted to say all the best and trust you get the proper help. Take care/L