I am wondering if there is anyone on the forum who also has AL Localised Pulmonary Amyloidosis. I would like to enquire how their condition is monitored.
I am asking because after being diagnosed in 2018 I have had an annual CT scan to monitor the nodules, growth. For the past couple of years and this year it’s been intimated that since there has been slow growth (as expected of my condition) the NHS hospital I attend feel that there is no need to continue with the annual monitoring.
