I was questioned as to why I needed tests to get a diagnosis many times in the last four years. Or why I needed a name for the illness that was so badly affecting my life.

I actually have it in writing that they felt that no more tests should be performed on me as they would never get a diagnosis. The letter also suggests that somatization / conversion disorder should be considered.

However the last test I had on the 21st of January 2011 proved them all wrong and they had to admit that I was ill and have postural orthostatic tachycardia. I am still waiting to start treatment and it wont commence until 24th March when I see the consultant.

In my case I wasn't being medicated or treated by the medical profession. I believe that somewhere in my notes it suggests I have somatization / conversion disorder. I can't prove this as Dr's can hide behind the law (in the UK) which means they can withhold parts of your notes if they believe it could cause you mental or physical harm to see them. Basically they hide all their fu** ups behind that.

I can appreciate where you are coming from with your quest for a diagnosis, but I am envious that you are receiving treatment! The diagnosis of your condition means you can have a tailored treatment programme. Without it treatment would be akin to shooting fish in a barrel. Eventually you will get somewhere but it will take longer without the elusive diagnosis!

Rach