Has anyone been diagnosed with POEMS syndrome?

Posted by Tracy @tlth, Jul 13, 2023

I was diagnosed in January with POEMS syndrome unable to walk or use my hands well due to numbness. I have been trying to walk with a walker but sometimes I fall due to my drop feet. It’s hard because I don’t have full function of my feet and hands. Is there any going through this right now. I don’t know what this disease will due to my body. I’m trying to stay positive.

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Colleen Young, Connect Director | @colleenyoung | Jul 17, 2023

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?

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