CMT / HMSN

Charcot-Marie-Tooth disease
AKA – Hereditary Motor Sensory Neuropathy 

I have had problems with my legs ever since I was born, it started with tight tendons, which resulted in my wearing orthotics and exercising and stretching everyday until mid teens.

At an early age three generations of the family were studied and a hereditary disease was confirmed. This was in the 1980’s when not much was known about CMT. I believe Raynaud Syndrome was mentioned.

Some time later, CMT Type 2 was diagnosed.

This CMT affected me primarily as having minimal perception of heat and pain particularly in my extremities. Fingers and Toes, getting slightly better as you move up my limbs.

During my childhood, I sometimes contracted an infection in a toe, this led to toe amputations. One episode of a toe infection, I was on oral antibiotics for 18 months trying to fight the infection, eventually that was another toe gone.

My most recent toe amputation was done without any anaesthetic. This was fine by me, I couldn’t feel anything anyway.