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Has anyone been diagnosed with POEMS syndrome?

Posted by Tracy @tlth, Jul 13, 2023

I was diagnosed in January with POEMS syndrome unable to walk or use my hands well due to numbness. I have been trying to walk with a walker but sometimes I fall due to my drop feet. It’s hard because I don’t have full function of my feet and hands. Is there any going through this right now. I don’t know what this disease will due to my body. I’m trying to stay positive.

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mak21 | @mak21 | Nov 22 9:01am
In reply to @jx2young11 "New to group. Originally diagnosed with Guillion Barre syndrome in january of twenty twenty five. Hospitalized..." + (show)
Profile picture for jx2young11 @jx2young11

New to group. Originally diagnosed with Guillion Barre syndrome in january of twenty twenty five. Hospitalized and had plasmapheresis treatments and showed great improvement for ten weeks. Then, plummeted and went through treatments again and continued to get worse. Was able to get into Mayo Clinic in Rochester in June of this year. I was diagnosed with POEMS syndrome and then Plasmacytoma cancer. Steroids, chemo and all the other meds have helped me get stronger but my hands remain at 50% and I have no reflexes from my knees down. I use a wheeled walker in the house, wheelchair for everywhere else. Afo braces do enable me to walk with hiking poles. Not real coordinated, think Frankenstein walking in downhill ski boots. I often wonder, how long the nerves can go without getting signals before they just cannot receive signals again? I am coming up on a year

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@jx2young11 Thanks for sharing your experience,may consider autologous stem cell transplant if u are a candidate for that,so far my experience has been great after the transplant,every case is different but I had a good neurological recovery in my extremities starting slowly but better by the day.

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Colleen Young, Connect Director | @colleenyoung | Nov 28 3:48pm
In reply to @cat59 "@mak21 I'm so happy for your recovery. I wish I had that option when I was..." + (show)
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@mak21 I'm so happy for your recovery. I wish I had that option when I was first diagnosed. I'm going to research to see if it's to late to try it now! Keeping my fingers crossed that I can at least try it! Thanks for sharing your results, it means a lot.

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@cat59, what treatment(s) did you have? How are you doing now?

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