Husband with POEMS Syndrome

Mother started getting ill 2018 and was diagnosed with everthing but poem. the treatment she was given was ivig, that was not helping, so we visited the Mayo clinic May 2021, and there was diagnosed with Poems. It has been an awful journey for her because the body has broken down so much, on top of that she fell and had a brain injury right before she was prepared to start her treatment plan in June 2021. /right now, she is in the hospital with a rash that has covered the entire body, except the face. Has anyone seen this if taking the Ravlimid

Bienvenue, @luciedaco. Votre témoignage donne de l'espoir et votre esprit est formidable. Comment avez-vous récupéré la mobilité et 80% de l'usage de vos mains ? Quelle thérapie avez-vous suivie ?

Welcome, @luciedaco. Your experience offers hope and your spirit is admirable. What therapy approaches helped you regain mobility and 80% usage of your hands?

Bonjour, j'ai un syndrome de poems depuis 2004, hélas 2 poems ne sont pas identiques, nous avons chacun nos symptôme et nos galères. Perso j'ai perdu l'usage des pieds et des mains, foie rop gros, problème de thyroide, de diabète et un cancer la hanche. 10 ans après la maladie a voulu revenir avec un cancer à la mandibule. Depuis que j'ai le poems j'ai souvent des chose rare comme un parasite d'Amérique du sud...etc. Maintenant je mache, je n'ai pas récupérer mes releveurs de pieds donc je m'adapte et j'ai récupérer 80% de l'usage de mes mains. Ah oui je suis Belge !

Forgot to mention it is not getting worse

Hi @sandy70yikes, I'd like to add my welcome and to tag a few other members into this discussion who have experience with POEMS syndrome like @gratefulone @craigkopcho @bburleson1 and @casseth02

Sandy, can you describe more what you mean that your husband's recovery has plateaued? He was making progress and now it's at a standstill, but not getting worse?

My husband has poems. It was diagnosed 3 years ago at Mayo Rochester. He seems to have plateaued in his recovery.

Hi @sandy70yikes, Welcome to Mayo Clinic Connect. You will see that I moved your discussion to a conversation about POEMS so you can connect with other people with this diagnoses. Are you a caregiver or someone with POEMS?

I would like to hear from patients with POEMS and their neurological recovery. The extent of recovery and how long it took.

Thank you @mojo1965 and @sallysue I find sharing my experiences and feelings from my caregiving years as a tribute to how hard my wife fought her war and a touch of therapy for me.

Love your posts @IndianaScott!