I was 47, so it was 4 years ago. I was scared of telling my doctor about the numbness because the only neuropathy I knew of was diabetic and I was terrified of having diabetes. I didnt have any diabetic symptoms or high sugar on blood tests, I was just scared. I developed a very serious infection from a callous on my toe which I didn't notice until it turned black and stinky because I have absolutely no feeling in my feet. The podiatrist cleaned it up, it took several visits and debridements to get rid of the necrotic tissue, but he said I had severe neuropathy and had to see a neurologist. He also said that my previous diagnosis of carpal tunnel was BS, that at my height (6'2") bilateral hand neuropathies should have been a dead give away that something else was wrong. She, my neurologist, was a neuromuscular specialist, but I didn't know that when I picked her out largely at random.

She suspected CMT the minute she saw me walk, but without a family history it remained suspected. Upset about not being able to help me, and concerned about progression since I was relatively young with children at home, she sent me to johns Hopkins for a second opinion. Same abnormal EMG, with a very severe SFN indicated by the skin biopsy. I also had a glucose tolerance test just in case, which scared me but was negative. I had the genetic test for HNPP since i have nerve entrapments all over my hands and arms but it was also negative. I refused, with the agreement of the Hopkins neuro, further genetic testing and a spinal tap, since they both admitted there was no treatment anyway. Good by, good luck, and pain killers for the rest of my life with a progressively crippling condition.

I feel like it really upset the doctors more than me. I have known for a long time that something serious was wrong with my legs, that I would end up in a wheelchair, whatever it was, but doctors like to DO something, and they were both very solicitous but definitely dismissive of me since there was nothing to do. My primary physician handles my pain management and that's it. This isn't as hopeful as a lot of the stories you will read on this forum, but it is important to realize that some neuropathies are like mine, not all respond to lifestyle changes, supplements, positive thinking, etc.

I do walk as much as I can, with hiking poles, to retain some muscle strength, but it is a losing battle. I believe that I can delay the wheelchair, but not avoid it entirely. Last summer I was able to complete an 8 mile hike on level ground. This year I do not think I could do it, but I want to try. My legs buckle more often, the numbness is up to my hips. Two years ago it didn't go past my knees.

I should have added that I have had restless leg syndrome since I was a young child. It is a definite symptom of CMT.