My neuropathy history

[Guest guest]

Hello to all,

I was diagnosed with hereditary neuropathy this past summer after

suffering with hand and arm tingling and aching for 10 years. My legs

and feet have never been a problem. I am 43.

Initially, I had a nerve conduction study and emg done on my arms,

because the doctors were fairly certain that I just had carpal

tunnel. The tests showed that all the nerves in my arms were

affected, not just the nerve that causes carpal tunnel. (I am not

medically literate, so please excuse my very " un-medical "

descriptions.) So I was sent to a neurologist.

The neurologist told me that neuropathy always starts out in the

lower extremities before moving to the arms and hands. Plus, I don't

have any of the usual symptoms associated with neuropathy: drop foot,

hammer toes, poor reflexes, etc. He did his own nerve conduction

study on my arms AND legs to verify the previous test results.

He found that my nerves in both arms and legs are " significantly "

impaired. The nerve speed is half of what is normal in the average

person.

He says I am a " fascinating " case because I appear to be normal,

though the nerve conduction studies say otherwise. I am only the 3rd

person he's ever seen with these characteristics. He made me feel

like a freak of nature...

Anyway, because all my blood work came back normal and because there

is some family history of neuropathy, he says mine is most likely

hereditary. Because it's hereditary, he said there is nothing that

can be done about it. When I pressed him, he said he could prescribe

a steroid to be taken for a short period of time to temporarily knock

out the arm tingling and achiness.

Reading through your posts for the past few weeks, I see that most of

you are on medication. I definitely am not in the kind of pain many

of you suffer from. Is my neurologist correct that I just need to

deal with this on my own and let the disease gradually progress as I

get older?

in Wisconsin