Welcome @tlth, I'm tagging a few other members into this discussion who have experience with POEMS syndrome like @gratefulone @craigkopcho @bburleson1 @casseth02 @sandy70yikes @selmon30 and others.

You may also be interested in this Mayo Clinic blog post on POEMS.
– POEMS: An expertise in the rare leads to a rare opportunity: https://connect.mayoclinic.org/page/hematology/newsfeed-post/poems-an-expertise-in-the-rare-leads-to-a-rare-opportunity/

What treatment options have been suggested for you?