Introduction

My name is Tom Herron.  I am 49 years old and I have been diagnosed with hereditary peripheral neuropathy.  The variety I have is strongly distal and slowly progressing.  My first symptoms appeared in 2004 at age 41.  I was into rock climbing at the time and started experiencing pain under my big toe on my right foot when climbing.  Despite rest and anti-inflammation treatments, the problem slowly got worse and I was forced to give up climbing altogether within a year.  At that point, I was diagnosed with arthritis of the first MPJ (joint at the base of the big toe).  Various podiatrists and orthopedic surgeons confirmed this diagnosis, but then would hedge by saying that it wasn't the worst they had seen.  By 2007, the pain had become debilitating in my right foot and was starting in my left foot.  Without any other options, I had the right 1st MPJ fused in late 2007.  This "gold standard" treatment did indeed bring relief from the arthritis inflammation that I had been battling, but the acute pain returned within a few days of resuming use of the foot.

In 2009, a physical therapist that was treating me, asked if I had ever seen a neurologist.  While he was careful to point out that he was not a doctor, he said that he saw "similarities" to neuropathic patients that he had treated in the past.  I did some research and eventually ended up in the office of a physiatrist (pain specialist) who administered an electromyogram (EMG) to measure nerve conduction to my feet.  The test showed virtually no response from the extensor muscles along the top of my foot, and he referred me to a neurologist for further diagnosis.  I quickly learned that peripheral neuropathy comes in two distinct flavors: autoimmune disorders which are often treatable and hereditary disorders which are rarely treatable.  After some (expensive) blood tests, the neurologist was able to rule out the former.  Although he suggested that I be tested for known genetic mutations linked to peripheral neuropathy, I declined since I saw no value in knowing information which did not open the door to treatment.

As the my peripheral nerves have continued to slowly deteriorate, I have repeatedly been at the brink of despair.  At one point, I discussed the option of having my legs amputated below the knee as a way to escape the unending cycle of pain.  Yet each time I was ready to take drastic action, I would make some discovery that would allow me a respite from the pain and allow me to carry on.  Over the next few blog posts, I will describe the tough lessons learned and the techniques I have found for managing the disorder and maintaining an active lifestyle.  Today, nearly 10 years after my first pain symptoms, I am relatively pain free and still ski, mountain bike, and go for walks with my dogs.