Hi Kitt,

He said something aboutwhen you have dysmyelination you are born that way...with the damage already done. Whereas demyelination the nerves are healthy at birth and then the demyelination process starts sometime after.

When I try to search dysmyelination it just seem to be the same as demyelination...but what do I know...lol

Some of the reasons he said that he didnt think it was CMT was neither my daughter or I fit the clinical picture of CMT physically or on the neuro exam.

My NCV were between 17-34...my daughters reading was 15-20. Not sure if the differences in velocity had anything to do with it.

The doctor we saw yesterday is the children's hospital is the equiv. of my Neuro at our hospital...department head, teaching hospital...neuromuscular area. Both are very familiar with CMT I am told.

My neuro said my NCV indicated that type would be 1a or x. I received the results of those genetic tests and they were both NEGATIVE. Still waiting on the results of 1b and 1e.

Also, my sx are NOT typical of CMT. Yes I have the twitches and muscle spasms but I get them everywhere, including trunk and face. I have the weird throat spasms, hemifacial numbness, and more recently every, and I mean EVERY muscle on the right side of my body from toes to my neck and head went into spasm. UGH! Hope that doesn't happen again any time soon lol.

There are many other sx that don't seem to fit into CMT. My CMT specialist outlined that recently in a report to my neuro.