I've read about CMT a bit. Of course it's very complicated, but it doesn't seem like there are many treatments for the condition.

Did any of you have earlier family members with this diagnosis? Or that you think may have had this diagnosis but it was missed?

I know that Sjogren's Syndrome sometimes occurs in family members, and then people are alerted to look for it a bit earlier than they might have otherwise been.

I had never even heard of it, or of Primary Immune Deficiency Disorder, when they were diagnosed.

So many of us are wandering in the dark for so long until we find the right doctors and the right tests. And then there is a 'bit more light' but so often we have to provide our own light to each other.

Hugs, elaine