Started getting swelling in my right leg last Nov and when I went to see my doc he thought maybe it was sodium. Well went down a bit once I stopped eating processed foods and other things but didn't go away. In June I saw my GI doc and she was looking at blood tests and ordered Heptice
Function Panel. I noticed Total Protein and Albumin were very low and she told me it was my Kidneys and to get into my primary. Got in with him the same day and he had me do a 24 hour urine test, got the results from that and the protein leaking from my kidneys was over 12,000. I had to
go outside the hospital for a kidney specialist or I would have waited 2 months. Get in to a specialist and he orders a kidney biopsy, week later I'm at the hospital getting the biopsy and staying overnight in case of bleeding. Next week I see the doc and he informs me that I have a pretty rare
disease and I'm his first patient ever with this AL Primary Amyloidosis. One week later I'm at the Cleveland Clinic with an expert in this and he put me through all other tests to check bone and heart and luckily for me it's only in kidneys. I started chemo the beginning of chemo taking Cytoxic through IV
and Velcade as a shot and a lousy steroid Dexemethasone. 3 weeks on 1 week off, no loss of hair. Because of my kidneys I'm not allowed to take ibuprofen any longer to help deal with sciatica pain and muscle pain around right lower back. Taking Vicodin and it's giving me weird bowel movements along with
chemo, had to use 4 Enemeez Mini Enemas today.

I was wondering if anyone else here with spinal injury has Amyloidosis? I'm the first for my doc so special needs with bowel and bladder. Oh one good thing I'm having botox on Oct 21 for my bladder and hope it helps I have to wear full diapers at night now, horrible.

Just wondering, thanks

Oh the Lambda Light Chains have come down in the blood and doc said I have turned the corner so that's good news but the last 24 hour urine showed even higher amounts of protein leaking into urine