Re: Would you

[Guest guest]

When we were wondering about whether to have the test for our son, my husband's

doctor recommended the nerve tests done anonymously and paid in cash because

once insurance companies find out about the diagnosis, they will find ways not

to insure you. If you have no symptoms, I would disagree with the usually

wonderful Gretchen. There's a 50 - 50 chance you don't have it.

If and only if you are planning to get pregnant, should you consider finding

out. First, has your father's gene been discovered? They don't know all the

CMT genes. If not, find out what your potential gene is through HIS testing.

Next, find out if pre-implantation diagnosis can be done for that gene. If

not, don't test. Can you afford in vitro fertilization? If not, don't test.

Do you have non-canceable health insurance and are you planning to stay in the

job that gives it to you?

You are lucky: you are symptom free and can assume you don't have it especially

if you are older than your father was when he first noticed symptoms. I

wouldn't get tested unless I wanted to get pregnant, could afford in vitro, and

knew from father's testing that the gene was one that pre-implantation analysis

was available for. Even then, I would go to a neurologist in another state and

get the nerve tests under a false name and paying cash. Just remember truth is

a defense to accusations of paranoia.

Until we have single payer health insurance run by the government, a little

paranoia is healthful.

Elinor