Fire Walker?

My sense of humor seems to take a front seat whenever I get news that tries to take me to my "unhappy" place. As I lie in bed contemplating my visit with my new neurologist and his diagnosis of peripheral neuropathy my humorous part of my brain decided to come up with what I could do with my new symptom or talent (to be on the positive side). Visions of fire walkers began dancing in my head! Hey, I could totally do that and look and appear to master the whole "mind over matter" thing! The funny thing about my imagination is it's pretty detailed. I can hear Brick House by the Commodores playing in the background as I strut across the burning rocks in a spandex jumpsuit that only members of a Jane Fonda '80's workout video could pull off. The people around me are clapping and bouncing to the music clad in shorts and t-shirts of the tropical Paradise they're surrounded by. As specific realities of my POTS symptoms set in so do the details of the scene in my head. Being temperature sensitive the scene changes from a tropical paradise to the frozen arctic. The spandex jumpsuit is replaced by a fur lined parka and the people are no longer swaying to the music in shorts and t-shirts, but huge coats and lined snow pants. There's no music playing, only the chattering of teeth by the crowd. As quickly as the scene changed from tropical paradise to arctic freeze, so did the humor change to hard truth. This new diagnosis isn't really funny.

As the doctor was moving a metal rod from my toes and up my leg, the reality that I couldn't feel the rod below my shin left me puzzled. The same thing was done with my fingertips up my arm, at first I was relieved that I could feel the rod on my fingertips, but then I was shocked to realize the rod was freezing cold at the fold of my elbow, and I didn't know it was cold until then. Peripheral neuropathy the doctor notes and on to other test and a discussion on treating my recently increased POTS symptoms. The discussion on neuropathy would have to wait as I educated the doctor on how I was treated in the past and a bit of hand holding (my holding his hand) as I encouraged him in proceeding with my typical regimen to combat my symptoms. I left the office with a lab slip for blood work and new questions to my already long list of unknowns with this disease.

This new diagnosis wasn't a total surprise, I had suspected it for almost a year now. Many of my POTSy friends have shared their experiences with neuropathy, and my symptoms seemed to echo theirs. But I've always felt that until I had a diagnosis, I would keep on my rose colored glasses and pretend my symptoms were just something else! I never seemed to ask the question about neuropathy in the past, because it always seems like we're dealing with some other more life threatening symptom of this disease, or major hurdles such as wheel chairs and handicapped parking.

I've noticed that I've been given the truth of this disease in small bite size chunks. Heart rate and dizziness chunk, nausea and fatigue chunk, wheel chair and handicapped parking chunk, migraines and supplements chunk, and now new doctor, health plan and neuropathy chunk. Never more than I can chew, never more than I can handle. God knows me too well and because of that I'll trust that this too is as manageable as all the other chunks.

Still inspired, Michele

Proverbs 15:15
All the days of the afflicted are bad, but a cheerful heart has a continual feast.

Neuropathy may be associated with varying combinations of weakness, autonomic changes, and sensory changes. Loss of muscle bulk or fasciculations, a particular fine twitching of muscle, may be seen. Sensory symptoms encompass loss of sensation and "positive" phenomena including pain. Symptoms depend on the type of nerves affected (motor, sensory, or autonomic) and where the nerves are located in the body. One or more types of nerves may be affected. Common symptoms associated with damage to the motor nerve are muscle weakness, cramps, and spasms. Loss of balance and coordination may also occur. Damage to the sensory nerve can produce tingling, numbness, and pain. Pain associated with this nerve is described in various ways such as the following: sensation of wearing an invisible "glove" or "sock", burning, freezing, or electric-like, extreme sensitivity to touch. The autonomic nerve damage causes problems with involuntary functions leading to symptoms such as abnormal blood pressure and heart rate, reduced ability to perspire, constipation, bladder dysfunction (e.g., incontinence), and sexual dysfunction.