knowing your CMT type

[Guest guest]

Jan,

To some, knowing their type is very important; to others not

important. I was diagnosed way before " types " - there was only the

name of " CMT " . (I was a kid at the time - 1959/60) It wasn't until I read the

newsletter back in the 80's that I learned about " types " . At my last

EMG the results came back normal with reinnervation, the report

suggests I have a less common neuronal (axonal) type. This was in

1998. I have not had the DNA blood test. There are MANY types of CMT

and the DNA test is not available for many types yet. But, the EMG

can pretty much distinguish between Type 1 and 2.

I do not have children, but if I did I would pursue the DNA testing -

this is because I am the only one in my family to have CMT. About 60 - 70% of

all CMT is Type 1A. This is why we see so much research on CMT 1A. 1A

also has a pre-natal test and people with 1A can be candidates for

pre-implantion genetic diagnosis for CMT free children (a genetic counselor can

tell you more)

Also if you know your type, you may be able to participate in research studies

if there is a call for a confirmed type. I would want my children to know

exactly the genetic link of my CMT and theirs.

Unfortunately, in addition to the lack of DNA tests available, the

cost is extraordinarly high.

How unfortunate about the Flagyl. That is one of the medications

listed for us with CMT to avoid. Here is a list of medications to

avoid in case you haven't seen it

http://www.cmtworld.org/html/cmtrx.php

Here is a link for the many CMT types - CMT is also called Hereditary

Motor Sensory Neuropathy

http://www.neuro.wustl.edu/neuromuscular/time/hmsn.html

Gretchen