Living with POEMS

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I was initally dianosed with GBS in Jul 2015, rediagnosed in June 2016 with CIDP and in Jan 2017 it was changed to POEMS.

Lots of physical therapy, accupuncture doctor, orthopedic doctors, chiropractors, trying to determine why my balance kept getting worse, and the drop foot, several neurologists and finally a tumor removed in Jan 2017 + Prednisone prescribed I finally started seeing some positive results. I had 25 radiation treatments, I have not fully learned about POEMS. I need a mentor to teach me POEMS for Dummies. I don't understand all the critical elements of POEMS. and so much of it talks clinical/medical that I don't understand. I realize that if its to be, its up to me, but I also realize that physicians don't have the time to take you by the hand, the learning will have to come from me. I wish there was a seminar I could attend, or is someone knows good resources to please share with me. I'm not opposed to learning, just apprehensive because i know so little and i know that everyone's story is different. I just want to connet with people that can help me understand,