My story
It began as a cold toe. After tests were done it was decided that it was a nerve pinched in lowere back region. Chiropractor said with therapy you won't need a back operation. 2012 back operation. Neuropathy getting worse. Saw a neurologist lumber puncture carried out serum consistent with CIDP diagnosed. Intravenous immunoglobulin treatment. In addition had to seevan Endocrinologist to remove a growth in my neck a PET scan was ordered small sclerotic lession found. No need for concern. Saw a Heamatologist carried out a bone marrow biopsy. Found M protein quite. High. At this stage my legs were weak used 2 walking sticks. However this became a problem as l lost strength in my wrists couldn't even hold a spoon. Engaged a home visiting physiotherapist muscles wete very weak. Soon after lnwas put on Dexamethazone which improved my condition. Now l walk unaided and drive a car. Fingers have more stregth but tge peripheral nerves have lost sensation. I wonder if they will return. I'm good and that god l get to spend another day with my family.
Find people with POEMS syndrome through the map. Connect with them and share experiences. Join the POEMS syndrome community.