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Living with Polyneuropathy CIDP, GBS, & CMT

Poems syndrome?


#1

Changed from CIPD to POEMS SYNDROME. Anybody heard of this or POEMS SYNDROME?


#2

Yes, I have heard of the term POEMS. POEMS (in basic terms) is a list of symptoms
Polyneuropathy : Damage to the nerve causing tingling, numbness as well as weakness of the feet and hands.
Organomegaly : Enlargement of organs such as lymph node, liver or spleen
Endocrinopathy : Hormone levels that are abnormal
Monoclonal protein : An assortment of blood proteins (Immunoglobulins) that are abnormal and made from cells of bone marrow known as plasma cells; also called “monoclonal immunoglobulin”
Skin alterations : Skin pigment increases, body hair increases, thickening of the whitening of the skin and nails.

There are a number of conditions which present with similar symptoms including GBS, MS and CIPD. Although these are known as individual conditions they can all come under the title POEMS. Again in very basic terms myelin protects nerves and is similar to the insulation (plastic) around an electrical wire, demyelination is the breaking down of the insulation around the nerves.
I hope that explains it a bit.
Merl from Moderator Support


#3

Yes, correct on all. Was told this attacks the core of the nerve instead of the sheathing like CIDP would do. That was why he changed the diagnosis from CIDP to POEMS. Also said there is no cure yet just like CIDP.