Hi Gill,
Sorry to hear that your Mum's going through a tough time of it at the moment. I think most of us would agree that the hardest thing at the start is the uncertainty that an Amyloidosis diagnosis brings. Unfortunately most GPs are almost completely ignorant of the subject and it is only the occasional doctor at the hospital who may have come across it. In desperation, you start trying to Google things and, to be honest, that can be more alarming than anything. The truth is that, as individuals, every one of us will have a different journey and outcome. Staying positive is difficult but, I would argue, essential.
You asked about where people were treated etc. I was diagnosed in Dunfermline in 2011 (AL type) and referred to the NAC. My experience of the NAC has always been extremely positive although I have to say that some of the members on our group were complaining that they were experiencing delays in getting their results and not having calls returned quickly. I suspect that this down to volume of referrals increasing so, if I were you, I'd keep an open mind about the NAC as it is definitely the centre of excellence for treatment of Amyloidosis and pioneering research into a cure.
If you - or your Mum - would like to join our Scottish Amyloidosis Patient Support Group. just drop me a line at mcconway.mark@gmail.com I'll introduce you\her to the group by email and then let you know where and when our next meet-up will be. It's always informal and friendly - generally meeting for lunch - and our next one is likely to be in June or July.
Please pass our regards to your Mum.
Mark
