NeuroTalk Support Groups - POEMS syndrome

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Peripheral Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/)

- - POEMS syndrome (https://www.neurotalk.org/peripheral-neuropathy/233090-poems-syndrome.html)

I am a POEMS syndrome patient. Had high dose Cytoxin in late 1990s. Have peripheral neuropathy and wear bilateral AFO. Any one else suffer from POEMS?

Hi Cynmacs,

Welcome to NT - I didn't know what POEMS syndrome is so looked it up and furthered my education. It's rare, it's complex and it doesn't sound great so you'll fit in well with many of us here. :D

Although I don't have POEMS myself it was very interesting reading the criteria as I do have neuropathy and adrenal insufficiency - as Meatloaf sings "two out of three ain't bad".

Given its rarity you may not find anyone here with the identical condition but you'll certainly find many with neuropathy who will be happy to share info and offer support. Maybe you could tell us a little more about your symptoms etc and how you're doing. All the best with ongoing treatment.

Hello Poems Syndrome Patient. You have finally found another who shares your diagnosis. If you are still out there, please reach out....I'd love to meet you.