Husband with POEMS Syndrome

Forgot to mention it is not getting worse

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 !

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?

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

what is the english response to this?

Is he on any treatment medicines? Mom was given Revlimid (spelling may be wrong). She has now developed a severe full body rash/hives/whelps, but started the meds a month ago with no problem

@selmon30. Using Google translate at https://translate.google.ca/ here is the automated translation from French to English:

@luciedaco wrote:
"Hello, I have a syndrome of poems since 2004, unfortunately 2 poems are not identical, we each have our symptoms and our galleys. Personally, I lost the use of my feet and hands, too much liver, thyroid problem, diabetes and hip cancer. 10 years later the illness wanted to come back with cancer in the mandible. Since I have the poems I often have rare things like a parasite from South America…etc. Now I walk, I haven't recovered my foot elevators so I adapt and I have recovered 80% of the use of my hands. Ah yes I am Belgian!"

Hi @casseth02, your post resonated with me. My husband is 45 years old. He was diagnosed with POEMS Syndrome earlier this year. It has rapidly taken over our lives. Prior to being diagnosed with Diabetes in the past couple of years, he was a healthy man. Last October he started to have health issues. In April of this year, he had numbness in his feet. By June he could barely walk. He had a plasma exchange in July and an Autologous Stem Cell Transplant at the beginning of August. By the time he left the hospital he had numbness in his fingers. Today, he is at a rehab facility with very little control of his extremities.
We have two young boys (3 and 7) and he is scheduled to come home this week. While I am happy to have him home, after almost 2 months... I am scared of not being able to do enough for him. How will I shower him (home limitations)? Will we be able to get him to/from Dr. appts safely? I went to rehab last week to learn and practice getting him to the car and what not. It was hard but we did it... even if he may have gotten some bruises. Ultimately, they recommended I get a lower car... at least for appointments.
I honestly am just so overwhelmed with thoughts that I don't know where to begin... Any advice?

@shaylarod Welcome to Mayo Clinic Connect and I’m so glad that you found us. You really have a difficult task on your hands. Let’s see if I can help and I’ll also find some members who can help you.
1. Get an appointment with the social worker at the rehab facility as soon as possible. Ask if she is able to delay his discharge for 1-2 weeks while you learn what you need and while the house is set up. Also ask if there are social workers in the community that you can make contact with.
2. Ask if the rehab facility has a ‘home inspection’ team who can come out and evaluate your home for safety. Also ask if they have training sessions for you to learn all you need to safely move your husband. Do you have the right equipment for him. The facility should be able to help with all his discharge plans, including if you will need assistance.
3. Community help: if your friends and family want to help, meals, errand, and child care would be most helpful. If home changes do need to be made, maybe a friend could start a Go Fund Me request for you.
I’m sorry, I think I’ve just overwhelmed you! Please ask more questions when you think of them.
Do you have any help right now?

@shaylarod were you ever able to get assistance from the rehab facility or a social worker as I mentioned in my previous post? I certainly hope all is going well for your family. Becky