I was diagnosed with HNPP (Hereditary Neuropathy Pressure Palsy) in 2000/2001.
I was diagnosed via an orthopaedic surgeon, who was assessing my son for suspected ulnar nerve palsy. Because of my previous history of similar symptoms and the fact that my son didn’t have signs of entrapment on the x-rays of his arm, we were given Nerve conduction tests, which prompted a DNA test confirming that I had the pmp22 deletion and HNPP. I was 41.
My first symptoms were as a young child after using scissors, ie numbness in thumb and forefinger where pressure of scissors was most felt. Numbness took a while to fade but initially cleared up within a few hours.
At the age of 16 I went over the handlebars of my bicyclce. I landed on my head and left shoulder, my arm was instantly dead, no movement possible. It took almost a year for full painfree movement to return. I didn’t see a Doctor about it, embarrassment and the fact that I could continue with my school studies as I was right handed. A dead left arm makes a good paperweight.