Primary amyloidosis and likely CIDP

---

Had growing numbness in the feet, inexplicable large blisters on the soles of the feet after long walks. Had a sudden onset of unsteadiness in Oct 2008. Diagnosed with Miller Fischer syndrome, treated with IGIV twice. Has two occurrences during the next year. Began having trouble urinating. Began to walk with a cane. Suddenly had issues driving as feet would not properly work the gas and brake. Had to stop driving. Went to many doctors, who could find no infection, or other explanation. Hip bone and abdominal fat biopsies negative for multi mylanoma and amyloid. Sural nerve biopsy showed amyloid but type of amyloid could not be determined. Feet and lower legs swelled up, eyes became puffy. Had to start using catheters as urine w as retaining, becoming very brown. 24 hour urine test showed high protein approaching then exceeding 1000. Doctors still could find nothing. Began walking with walker. Gait still after several years very unsteady. A kidney biopsy showed primary amyloidosis which was treated by high dose chemotherapy and stem cell transplant rescue 3 years ago. Now have high protein level of 300 in spinal fluid and am deaf in one ear, nearly so in the other. CIDP is suspected with unknown cause. Am on disability. - advise that all high protein in urine be checked for amyloid early, else nerve damage is considerable. Doctors should escalate undiagnosed cases, I was told many times I was stable when the condition was getting much worse. Don't let them off the hook or let them tell you it's in your head. This is very severe stuff. - previous history of epileptic seizures starting in teens. Controlled by Dilantin for 40 years. Also bad asthma from childhood till adulthood. Fortunately outgrew that by age 20.