Why am I so nervous I wondered? This is just my annual checkup with my neurologist. Arriving early I took advantage of the free valet parking. As usual my neurologist brought an entourage into the room with him. As expected the fourth year med student and nurse had never heard of Charcot-Marie-Tooth disease (CMT.) After answering a few routine questions, I mentioned that I fell at my husband’s company Christmas party. My doctor asked, “Was that before or after you got into the eggnog?” I admitted having a couple of glasses of wine, but most people don’t just tip over backwards and fall after a drinking a little wine.
My neurologist then tested the strength or lack thereof in my arms, legs, hands and feet by having me try to resist as he pushed and pulled my limbs. Next, using the reflex hammer on my knees, elbows, and ankles, he demonstrated my lack of reflexes. Although if whacked hard enough, I still have a slight reflex in one elbow. The sensory exam followed including testing for pain sensation with a pin prick, light touch sensation with a brush or finger, and sensitivity to vibration and temperature with a tuning fork.
In some areas of my legs the sensation is delayed, but due to limited feeling in my feet I cannot detect the vibrations of the tuning fork or notice the difference in temperature very well.
Next the med student observed as I struggled to move my toes. Also, turning my foot outward was nearly impossible. Then my neurologist asked me to walk a few steps back and forth, with the nurse by my side in case I lost my balance. Usually walking without my shoes results in falling. However, still early in the morning, I concentrated staring at my feet to make sure I knew where they were going. People with CMT also have diminished proprioception, or position sense, of where their body is. If standing still with my eyes close, I tend to start to fall over. Thankfully the nurse standing by my side caught me.
After watching me walk, my neurologist told me it was time. Along with the brace on my left leg, now I need a brace for my right leg. My good leg is no longer good enough. The ankle turns out so that I walk on the side of my foot even when wearing the special, very expensive shoe inserts. I knew this was coming. Last year my physiatrist, rehabilitation doctor, said, “ Looks like you need a brace on your right leg.” My response, “No I don’t!” I was not willing to admit that my CMT was progressing. I was getting worse.
My left leg has always been problematic. As I child, I was always spraining my ankles and falling. During my college years, fellow students frequently asked me, “What did you do to your ankle?” I momentarily thought of relating some exciting skiing accident. Instead chose to be honest. “Nothing, that’s just the way I walk.” Numerous doctor visits and x-rays revealed no obvious cause for my ankle swelling and pain, no diagnosis or reason for my difficulty with walking.
Although one doctor indicated a floating bone chip from a previous fracture was reeking havoc. I had heard of baseball pitchers with bone chips in their elbow receiving lazar surgery to blast the chip. So, I hoped this would be an option for me, but this doctor did not recommend surgery. Instead he suggested I wear high-top sneakers for extra support.
Years later, I began each morning by sliding out of bed, taking a few steps, then falling. I looked around to see what I had tripped on, checking under the bed and dresser thinking maybe I kicked something under there as I fell. Finally, I realized I was tripping over my own feet. My toes caught on the carpet, but I could not feel this happening. Then, I needed to crawl over to the dresser to pull myself up off the floor.
After finally being diagnosed with CMT, my left leg was fitted with an AFO (ankle foot orthotic) or as I refer to it my ugly brace. Although the AFO does stabilize my ankle and improves my gait; I hate it. My brace is outfitted with a big ugly bolt protruding visibly at the ankle. Also, I need to wear bigger wider shoes. The good news is, I don’t need to wear it all the time, just when I will be doing a lot of walking or standing or exercising. If I’m just sitting on the couch, I don’t need it.
The day before my appointment with my neurologist I could feel myself becoming nervous, but was not sure why. Maybe I worried he would tell me I was noticeably worse. After-all, I had fallen a few times since I last saw him. It wasn’t until I heard him say, “You need a brace on your other leg,” that It hit me. This was why I was so nervous. I wasn’t quite ready to admit that my good leg was no longer good enough.
- Yes, that hurts! (cmtnyus.wordpress.com)