Thanks for all the advice everyone. I do hope i dont have every man and his dog trying to guess what i have (my little bro, now 15, had to have spinal surgery about 18 months ago and at the specialist app at starship they brought in all the trainiees to try and guess his condition). Mum asked me to go with them so that i could ask any questions she forgot, and perhaps remember things she didn't, although she did take notes.
I will make sure to keep all letters (and envelopes which i hadn't thought about). Trying to think of someone to take with me. My referral to the eye specialist has already gone awol, but my gp (who has no idea about the condition) is on to it.
Carly...whats your blood type, found out mine is AB- which i understand is also very rare,,,I always knew i was special, guess now i how just how special :lol: