My Story: Large Fiber Peripheral Neuropathy.
I don’t actually know when my neuropathy started, but I defintely had numbness in my feet, and problems with tripping and falling beginning in my early sixties. This became more pronounced after a bilateral knee replacement that I never seemed to fully recover from. In spite of the symptoms, the neuropathy remained undiagnosed, even when my primary care physician referred me for an MS workup when I was 66. They found no MS, but identified significant cervical spine degeneration, which was treated with surgery. The emg part of the workup did not show neuropathy but did show radiculopathy affecting my left leg, which sort of explained why that leg was falling asleep while I was out walking. I started using a cane around this time, though I couldn’t really explain why I needed it, as I didn’t have a “diagnosis.”

The diagnosis finally came four years later, just as I was turning 70. I had developed left side foot drop so my PCP ordered another emg. This time the emg showed “generalized neuropathy” in addition to the radiculopathy. Because I don’t have the sort of pain issues I usually hear about with neuropathy, this diagnosis didn’t make sense or seem significant until I received an explaination from a neurologist. When he described the symptoms of large fiber sensory-motor neuropathy they were quite familiar. He also gave me the good news (it won’t kill you) and the bad news (it could ruin your quality of life) and the other bad news (we can’t identify an underlying cause, so we can’t actually treat it.)

The best advice the neurologist gave me at our first meeting was that I needed to be open minded about the possibility of using a walker. I was horrified at first, but visited a mobility store and tried a rollator-style walker just so I would actually know what I was talking about. To my surprise, I fell in love with the thing and now use it most of the time when I’m out of the house. It not only gives me a lot of balance confidence, but allows me to walk in a more “organized” way that is easy on my lower back pain . . . I think it’s that “shopping cart effect” I’ve heard about from other back pain sufferers. The walker helps my socialization, by allowing me to walk longer and more comfortably, meaning that I can be included in social walks with friends around my pleasant small town and on shopping trips. And when we run into other friends and stand and talk—as women do—I can sit on the walker and avoid the stationary standing that is another trigger for my lower back pain.

The neurologist also referred me to a physical therapy practice that specializes in neuro rehab and balance. It has increased both my strength and my confidence in staying active in the world. By confidence I mean believing that I won’t fall, even though it always comes as a complete surprise how my body responds to a slip or a lapse in balance.

Typically large fiber neuropathy starts in the feet, moves up the legs and then starts affecting the hands.This was what I was really afraid of, as I do a lot with my hands: I’m a retired art teacher currently painting portraits and a very enthusiastic music student (piano and ukulele.) When I started to develop various hand symptoms (pain, numbness, parasthesias, etc.) I was worried, so my neuropathy PA ordered an upper emg. This showed radiculopathy on the right side and carpal tunnel in both hands. The testing neurologist noted that the carpal tunnel has the neuropathy as an underlying condition, and that this is a sign that the neuropathy is beginning to affect my hands, even though it was not yet bad enough to show up on the emg as a separate finding. I had endoscopic carpal tunnel surgery on both wrists two weeks ago, and am waiting now to see how the symptoms respond.

The neuropathy is a challenge on top of a list of other health problems, including osteoarthritis and heart disease. It’s often hard to tell what symptoms are connected to what condition.

Being strongly motivated to keep up with my wonderful family and friends and my interest in visual art and music helps me to keep my focus off health issues and pain most of the time. I hope that Connect will give me a place to communicate with other people facing similar challenges.

One question, is there a large fiber neuropathy thread?