POEMS Syndrome

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RE: POEMS Syndrome

by captkfly on Mon Feb 25, 2008 12:00 AM

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On 1/24/2008 VALEON wrote:

I have had POEMS for two years

Hi,

Could you please tell me the "exact" symptoms that you have displayed to be determined to have the POEMS syndrome.  I have many symptoms, but there is some discussion about the neuropathy; it has to be exclusively "demyelinating polyneuropathy."  Are you or is anyone knowledgeable about this? 

RE: POEMS Syndrome

by wanda_y on Sat Mar 01, 2008 12:00 AM

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On 1/24/2008 VALEON wrote:

I have had POEMS for two years

Would you please elaborate on your symptoms, treatments and how you are doing now?  Thanks, and take care.

RE: POEMS Syndrome

by SheilaL on Tue Apr 01, 2008 12:00 AM

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I am a 28 year old that went to Mayo in March. I went through multiple tests and was diagnosed with POEMS. I was first diagnosed with CIDP from my local nuerologist. I have had this problem for a year now. I have gotton worse with the weakness in my legs and upper body. I have two lesions that are being treated by radiation and then I go to MAyo again for a bone marrow transplant. I 'm happy to find this message board and that  there is someone young like me who has this syndrome. Did your son get a correct diagnoses? How is he doing now?

RE: POEMS Syndrome

by dj.rudolph on Thu Jan 27, 2011 06:20 PM

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My husband was diagnosed with POEMS in 2005.  He became ill in 2004 and was misdiagnosed twice, first with guillian barre syndrome and then with CIDP.  We finally took him to IU Medical where a first year resident diagnosed him with POEMS.  Sure enough she was correct and we then took him to Mayo Clinic in 2006 where he had a stem cell transplant.  He almost died from the procedure and he was in a coma for 13 days.  We go back to Mayo for regular check ups and he is on a large amount of drugs.  The bad protein is no longer in his blood, so he is in remission.   However, the disease has left him with peripheral neuropathy  that is at times unbearable.  He originally was in a wheel chair, graduated to a walker, and now uses a cane.  His POEMS doctor had hoped for a complete recovery, but since the disease escaped diagnosis for so long there has been too much damage to the nerves in his legs.  So, his legs are about as good as they are going to get.  I am thankful to have him.  He had never had a sick day in his life until this dreaded disease decided to inhabit his body.  I would recommend Mayo Clinic for anyone who even thinks they may have this disease.  They were wonderful and I can't say enough good thinks about this clinic. 

RE: POEMS Syndrome

by WolfKS on Tue May 21, 2013 04:26 PM

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My wife was diagnosed with POEMS in 2012 (at Memorial Sloan Kettering).  She had all the symptoms associated with this disease, but appeared to be in a realtively early stage.  Her doctor recommended aggressive treatment, which included a couple rounds of mild chemo, then a stem cell transplant.  She spent three weeks in the hospital, which was more annoying to her than physically uncomfortable.  She was a little tired, and had some mild nausea, but in general it went well.  A couple months later they did a bone marrow biopsy to check her protein levels, etc, and there was little to no change.  Then her doctor put her on Revlimid, and her protein levels began to drop like crazy (yay!).  This appears to be doing the trick, and her neuropathy is even starting to lessen.  It seems like managing this disease it more of an art than a science, and finding the right combination of treatments may take a little time and can be very frustrating.  The folks at Sloan have been absolutely amazing.  Seems to me there are really only two good choices to go to deal with this, Mayo and Sloan. 

RE: POEMS Syndrome

by Shule on Thu Sep 14, 2017 08:45 AM

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Hello, I am 32 years old diagnosed with poems Syndrome&amylodiosis. I was wondering how is your wife?Any updates?

RE: POEMS Syndrome

by Shule on Thu Sep 14, 2017 08:53 AM

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Hello, I am 32 years old diagnosed with poems syndrome& Amyloidosis.I have been taking chemo for a while now and going to have stem cell transplant after. I was wondering how are you doing?
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