I thought this was site was going to help me too! I really haven't benefitted because it doesn't seem to be a very active board. I do benefit in being able to read the stories of other families dealing with CMTC the the posts are far between. I hope that you get the diagnosis you are searching for.
We are starting another round of doctor visits again. My daughter will be going back the the dermatologist to get a referral on to someone else. She is now having a different growth rate in her affected leg. She is also having some weird thing going on with her eyes where she is rubbing them so hard that she is rubbing her face raw. She is again not sleeping through the night since the temperature has dropped so significantly (0 today!). She also has some new sores above her ears that aren't healing.
I wish I could find some parents that have been sucessful in there search for the right doctors with the right answers. I really want some people that I can communicate regularly with that understand what I am dealing with. I am tired of everyone at work thinking I'm crazy. They don't get it because CMTC isn't something they have heard of.