Husband with POEMS Syndrome

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Husband with POEMS Syndrome

by Casseth02 on Sun Apr 16, 2017 04:51 AM

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My husband has had POEMS Syndrome for almost 2 1/2 years. It took so long to get a correct diagnosis because his symptoms mimiced so many other conditions.  He has been completely bedridden for 2 full years now. He is also now treated as a quadriplegic due to nerve damage in his lfeet, legs and hands. His hands are completely contracted now. His legs and feet are completely paralyzed up to his hips. We tried to have a Stem Cell transplant but his doctors were sure he would never survive the Chemo along with it. He has multiple lesion sites and radiation.  Due to the lack of treatment options available for him, he has decided to go  Hospice.  I am trying to find out what kind of life expectancy he could have at this point.  I want to make his quality of life a pleasant one. 

RE: Husband with POEMS Syndrome

by Shule on Thu Sep 14, 2017 09:15 AM

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On Apr 16, 2017 4:51 AM Casseth02 wrote:

My husband has had POEMS Syndrome for almost 2 1/2 years. It took so long to get a correct diagnosis because his symptoms mimiced so many other conditions.  He has been completely bedridden for 2 full years now. He is also now treated as a quadriplegic due to nerve damage in his lfeet, legs and hands. His hands are completely contracted now. His legs and feet are completely paralyzed up to his hips. We tried to have a Stem Cell transplant but his doctors were sure he would never survive the Chemo along with it. He has multiple lesion sites and radiation.  Due to the lack of treatment options available for him, he has decided to go  Hospice.  I am trying to find out what kind of life expectancy he could have at this point.  I want to make his quality of life a pleasant one. 

Hello, I am so sorry to hear about your husband's story with poems syndrome:( I am 32 years old also diagnosed with poems syndrome along with amylodoises.I hope he will get better .God bless you Shule
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