Nerve Biopsy - is it worth it?

[Guest guest]

I was supposed to undergo a nerve biopsy this afternoon, but it was

postponed due to some internal confusion at Kaiser. Now that I need

to reschedule, my wife is voicing some strong misgivings about the

procedure. The way I figure it, the risks of adverse side effects

are low and I am already experiencing some numbness in my foot

anyway. I really feel the need to learn more about what form of CMT

I have...and after a year all that I know is: 1) the test for type

1A was negative and 2) my NCV tests indicate that I may have both

axonal and myelin damage.

I know that a number of the group's members have been down this same

road before me. Am I out of my mind for wanting the biopsy to see

what type of nerve damage I have? I feel a very strong need for

confirmation that this is CMT and to learn what type I have. My

wife feels that I am going to have them intentionally damage a nerve

and add to my problems.

I am also supposed to have a consultation scheduled with a " genetic

counselor " at Kaiser, but at this point I have no clue as to whether

they will authorize any additional genetic testing.

I am interested to hear from others in the group as to their

experiences...whether they have had nerve biopsies or opted not to

undergo this procedure.

Ken