Hello @nnumba2, Welcome to Connect. I know it has to be extremely difficult and stressful dealing with everyday life when you have such a rare condition like MCD. I do think a symptom diary is a great idea and will help with any upcoming doctor appointments. there is a site with a lot of good tips for communicating with your doctors that you might find helpful - https://patientrevolution.org/visit-tools

I'm not sure if you already have seen these websites but thought I would share them just in case.
-- Castleman Disease Collaborative Network: https://cdcn.org/physicians-researchers/
-- Castleman Disease - NORD: https://rarediseases.info.nih.gov/diseases/9644/multicentric-castleman-disease

There is also an older discussion that might be helpful to read through the posts.
-- Castleman Disease: https://connect.mayoclinic.org/discussion/castlemans-disease-1/

I'm not sure if it's an option but have you thought about seeking help at a major teaching hospital or health facility?