I'm going to be writing to my MP from the perspective of someone newly diagnosed and the ways in which the lack of knowledge and awareness about the disease affects me at what I must say is a very difficult time.

However, I do not, as yet, have any experience with the NHS in relation to this. So far, I have been dealing with private doctors through my insurance. I don't even want to think about dealing with my GP for this. I had to tell him what to prescribe for my migraines. He also thought the torn cartilage in my wrist was arthritis.