Hi Lesley,
Sorry to hear you have lost your PIP allowance. I don't have any experience of dealing with PIP, but I agree you should appeal.
Perhaps you can get support from the Maggie's Centres.
I went to a Myeloma UK Group meeting last night at the Glasgow Maggie's Centre, and although I have ATTR Amyloidosis and not AL Amyloidosis, I was made very welcome by both the Myeloma UK nurse running the group and the Maggie's Centre staff. One of the ladies I spoke to is the Maggie's Centre Benefits Advisor. I was told to drop-in any time I was passing by.
There are Maggie's Centres around the UK attached to NHS cancer hospitals. There is also a Maggie's Online Centre. I've attached a link to their website. Hope they can help.
https://www.maggiescentres.org/"Maggie’s offers free practical, emotional and social support to people with cancer and their families and friends. Help is offered freely to anyone with any type of cancer. Simply drop-in at any time - you’re always welcome."