Comments on: A new beginning: Woman with rare disorder gets life back after stem cell transplant

By: Chris Gregory

Chris Gregory — Mon, 29 Apr 2013 18:15:14 +0000

My father has been dealing with what we’ve come to know as POEMS for the past few years. After meeting with several doctors and going through regular IVIG treatments we visited Cleveland Clinic. It was here that we finally moved beyond CIDP to POEMS. Like many of you, he went through the stem cell transplant procedure at Northwestern (in coordination with Cleveland) in Chicago. Unfortunately, today we learned that the stem cell procedure did not have the intended results. Now we’re looking to Revlamid for help with slowing the fatigue, numbness, and pain symptoms.

Reading of the above success stories is wonderful. If there happens to be anyone with any additional information or experiences, please share. Additional dialog can only benefit given the rare and unknown characteristics PEOMS.

By: M Whala

M Whala — Thu, 17 Jan 2013 17:07:52 +0000

I was diagnosed with POEMS in Aug 2011.Started with symptoms of numbness and tingling in toes and feet in Feb,2011.Pretty soon I was wheel chair bound(by April 2011).Was initially diagnosed with CIDP and got treatment for that for 6 months.Finally by Aug when was almost a semi quad,doctors re tested me.Found a Myeloma in my hip causing POEMS.
Had radiation for 1 month and IV chemo for 6 months.Was scheduled for Blood and Marrow Transplant(autologous) in Mayo Clinic in Feb 2012 but was not medically stable to undergo procedure.Then at that time started on Revlamid Tab (which I call a MAGIC DRUG).I noticed physical changes in weeks after taking that.
Finally had BMT in Oct 2012 in Mayo.Recovered pretty well from that.Now I can walk with braces and use walker.Right hand has come along much better but left hand still has contractures.Working with therapists.Hoping to gain more strength over time.
POEMS is so rare that I thought I was the only one suffering from that.But nice to hear other stories.

By: eric shell

eric shell — Sat, 22 Dec 2012 05:34:29 +0000

i too have poems. was diagnosed and began treatment at 29yrs old at west michigan university. was diagnosed soon after finding a great job, amazing girlfriend, and a baby on the way! some luck eh? i do consider myself lucky though as my life is better cause of it.

i started noticing tingling/numbness in my toes, then feet, then before i knew it, i couldnt walk. there were some symptoms beforehand that i now know were symptoms.

was first diagnosed with CIDP after i had to leave my new job, and just got promoted. once i began treatment for CIDP, my symptoms got exponentially worse. i walked in the first treatment, needed a cane the next week, a walker the next, then wheelchair bound the next! scary stuff!

a few weeks later it started over in my finger tips, then hands… basically a quadrapalegic! couldnt move hardly, couldnt feed myself, transfer myself, go to the bathroom, dress, etc…

went to U of M and was diagnosed with POEMS. started steroid therapy and physical therapy, and eventually an anologous stem cell transplant.

seemed to do the trick (only time will tell). i am fully independent once again. my hands are still weak, but useful now, and i can easily use a walker and almost as easily walk with a cane and ankle braces! =) just need to keep practicing and im gettin better all the time now, just need to get my ankle strength back to be pretty much normal again.

baby is 14months old and doin great. been able to take care of him by myself a while now while my gf goes to work. i see a light 🙂

By: annie

annie — Sat, 22 Dec 2012 00:12:10 +0000

In reply to annie. A very close friend just diagnosed with poems and its scary!

By: annie

annie — Sat, 22 Dec 2012 00:10:39 +0000

Would love to hear more good stories