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Hi. My partner has just been diagnosed with POEMS. He awaiting the start of radiation treatment for a lesion on his hip. He has polyneuropathy and currently his legs aren't functional at all, so rehabilitation will be a long process.
How have others coped/ dealt with this and has anyone any suggestion with approaches which worked for them?
He's mid 60s, we're in the UK.

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Replies to "Hi. My partner has just been diagnosed with POEMS. He awaiting the start of radiation treatment..."

Can you provide exactly what POEMS anacronym letters represent?

'POEMS is an acronym that stands for the disorder's five major signs and symptoms, which include Polyneuropathy, Organomegaly, Endocrinopathy, Monoclonal gammopathy and Skin abnormalities.'
(From rarediseases.org)
Those are the symptoms - but they are caused by a plasma blood disorder.

Welcome to Mayo Connect, @maggiejay People with POEMS syndrome have an increased number of plasma cells, which can cause damage to other parts of the body. POEMS is the acronym for Polyneuropathy, organomegaly, endocrinopathy, monoclonal gammopathy, and skin abnormalities. It’s a rare multisystem disease that causes a blood cell disorder and nerve damage, with several other effects.

There are a number of members in our forum who also have experience with POEMS so let me tag them for you. Please meet @tlth, @gratefulone @craigkopcho @bburleson1 @casseth02 @sandy70yikes @selmon30 and others. Hopefully they’ll be able to offer you and your partner a better understanding of coping with the neuropathy and side effects of this condition.

I also found a number of helpful conversations for you to explore. Feel free to pop into any discussion! You can reply directly to someone by making sure you hit the blue reply button in that conversation to make sure the member gets a notification. Or simply type in their @name so they see the notice.

Living with Neuropathy - Welcome to the group https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/
This is a great article from very well health.com
An update on the diagnosis and management of the polyneuropathy of POEMS syndrome:
Foundation for Peripheral Neuropathy – POEMS – Treatment & Therapy:
POEMS syndrome care at Mayo Clinic:

You may also be interested in this Mayo Clinic Newsfeed page on POEMS which has a link to a clinical trial that may still be available.
– 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/

I hope your partner does will with the radiation treatments. Did he also require surgery for the lesion?

I thought I would check in.
@tlth, how are you doing? Are you receiving any treatment at the moment?

@maggiejay, when will your husband start radiation and how often? How are you doing?