Jonathan BaggsHi trying to put a post on here but can’t find how to do it so I will posy here, sorry.
My wife Anna had her appointemnt at NACs come through today. There is a problem and they can’t do a SAP Scan but they will do a DPD. Anna has Lymphomaplamcytic Lymphoma IgG with Kappa Free Light Chains. She has had a blood test for ATTR and as suspected it is negative. I understand a DPD is only any good for ATTR? is this correct? She would be better having a Cardiac MRI with Gadoloium and maybe at the same time they could do her Thoracic spine looking at nerve roots, this was suggested at UCLH but never done with Gadolinium. Does anyone know are they short of Serum amyloid P, they say they can’t do it until October. They could also look at the increasing liver cysts, now 5, 2 in April last year and one in 2023.
We are at a loss, they have not been given all the information, I did send them some including the private protein urea test showing high levels and high fluid intake. Anna was told they can only do what is on the referral, This has happened before, Anna is also waiting for some biopsy results Prof Gilmore got some bitch samples from her Hospital to hopefully reexamine.
Any ideas what we do, how can I post this.
Thanks
Jon and Anna