Thanks for the info Kitt ... I will read it all prior to my appointment.

First I had a nerve conduction test, and my "number" was 27/28 rather than 50. (???) Then a lumbar puncture (testing for CIDP) which came back clean. We then sent some blood work for DNA testing, and the result was CMT, Type 1A (chromosome # 17) (I have a lot to learn about this ...). I have spoken with family as this is inherited; but, no one seems to be able to connect the dots so far. My grandparents lived in a small village in Italy, so it could very well be that they were never diagnosed (they are now deceased).

My symptoms vary from day to day ... a wonderful surprise to look forward to upon waking (although the nights can be baaaad!) The basics are tingling in feet, legs, arms and hands (one night it even reached my lips). The toes on my left foot are always numb. My left ear always rings, so I sleep on it to muffle the sound. I will have SEVERE muscle cramps from time to time (that's what brought me in for testing). Sometimes it feels like someone is pressing a large coin on the back of my right calf, but it feels like a void. Sometimes sharp shooting pains, sometimes "electrical" type shooters. My shins feel awkward/crampy and I end up stumping around like Frankenstein because I can't use a normal stride (can't use the small stabilizing muscles from foot to lower leg). There was a two week period that I would wake up in the night and would be unable to move. Had to concentrate on moving fingers and toes and then waking the rest of my body up so that I could turn over. The sheets are stronger than I am, and I have to sleep with my feet out in case I have to jump out because of a cramp. I understand the phrase "it feels like I'm wearing a pair of boots filled with worms".

I do not have to use a cane or any other device. I did have an "acute" period in May, and I could hardly walk at all, extremely tired and weak.

Then .... every once in a while, I have a day that is completely symptom free. OH JOY!

I have a lot to learn and plenty of reading to do .... thanks to you all for taking the time to help my out.

I'll be in touch, Di.