Things Are Not Always As They Appear . . .

I visited the hospital today to get some pre-op blood work done in preparation for 'the mad scientist' to remove the pin from my left foot next Tuesday.  When the doctor on duty started interviewing me and asking what type of procedure I was having, I stated that I had reconstructive surgery on my foot and ankle in January and that we were just going to remove some hardware from that surgery . . . when he asked why I had to have reconstructive surgery, I told him that I have Charcot Marie Tooth.

He was completely taken aback?!  He said, "Wow, you don't appear to be a typical CMT patient . . . and CMT is very rare.  How is that you were able to get diagnosed?  I mean, you don't look like most patients."

I explained that even though I appear to walk normally and to have full use of my hands, that I do in fact have most of the debilitating symptoms.  And, after meeting and swapping stories with other CMT patients over the last year, I think I'm finally able to pinpoint my personal level of suffering.

On a scale of 1 to 10 measuring the severity of symptoms, I think I am probably about a 4; I'm truly lucky and I will probably continue to have full use of my feet and hands for the rest of my life with the benefit of surgeries and medication.  But, even though I don't have symptoms that are life threatening, they are still prominent, limiting, and frustrating:

- burning and stinging sensations in the feet
- random leg twitches
- joint stiffness
- pain, numbness and tingling in the hands
- high arches
- painful calf muscles/leg cramps
- propensity for tripping and falling/clumsiness
- limited reflexes and sensation below the knees
- scoliosis (curvature of the spine)
- tilted pelvis