Next step now that tests came back negative

[Guest guest]

Before I wrote this, I went back and did a search under " negative

test results " and can see that I am far from alone.

Nonetheless, I am very disappointed that my full panel test from

Athena came back all negative. We had suspected an X-linked CMT. I

understand that negative results do not prove anything, but I

desperately wanted a solid diagnosis. I wanted to know whether I

may have passed this condition on to my son and I wanted to know

what I might expect in the future. It feels as if I am back to

square one.

I had put off having a nerve biopsy done until after getting the

test results. Now that those results have revealed nothing, I am

back to the great debate: should I have the nerve biopsy done?

Will the chance that I can learn what type of nerve damage I have be

offset by the chance of additional nerve damage that might result

from the test? Do I risk another disappointment if they find no

nerve damage despite the NCV readings (slow velocities in lower

extremities - 27, 27, 28 & 29 m/s in the four nerves tested - with

low to borderline motor amplitudes)?

Obviously, a lot of the members have been through this; each

decision is personal. But what do you think - should I have the

biopsy done, or just forget about further efforts to learn exactly

what I have?

The doctors have found no signs of any other conditions where

peripheral neuropathy would be a secondary feature. Another concern

is that I took a bad fall about 6 weeks ago and it wasn't the usual

ankle bend or foot drop. My legs simply decided not to follow my

brain, and I kissed the sidewalk hard. I have started to use a

walking stick for now, but I don't know why this happened or whether

it is a sign of more surprises to come.

My thanks to all for past feedback. Knowing that others have shared

my experience is helping to keep me (somewhat) sane.

Ken