[Shazza]

I went back to Kings in May - It appears I've had all the genetic/chromosome tests & I dont have either AA or MDS.

I asked the doctor how many people do you see at Kings with hypoplastic bone marrow like mine but who don't have chromosome abnormalities that indicate AA/MDS - he said there were no others he was aware of!

He explained that since my condition is so rare, they have no data & could not give me any information other than, I have 3 possible outcomes - AA, MDS or to remain stable.

Apparently as new tests are developed, my blood & bone marrow samples are sent off & they are actively searching for a diagnosis. Until then, I suppose I am on a watch & wait for who knows what, with 3 monthly blood tests.

I have spent the past year trawling the internet for information on my neutropenia & hypoplastic bone marrow. I've read about other peoples experiences & stories & learnt a great deal. However, I could never identify with anyone completely.

I have been fortunate to have met a straight talking doctor who says it how it is. Now I am completely confident with the diagnosis (or lack of) & am assured that they are doing all they can to come up with some more information.

As soon as they do, I'll share it on here so that any hypoplastic neutropenics with a (as yet) normal set of chromosomes will find some info.