Fast forward to 1998. The numbness in my foot has been spreading, accompanied by a burning, tingling sensation. It's hard to get comfortable at night. I have difficulty walking for any length of time. Worse, it has spread to the left leg, especially after an episode of "mushiness" in the joints and muscles.

The general practitioner does some blood work. Seems the sed rate is elevated. So off I go to the rheumatologist. He does a thorough workup, including more blood tests. Sed rate is not elevated. I don't have arthritis. Trouble must be neurological in nature. Back to the GP; then on to the neurologist for testing.

First neurologist doesn't introduce himself. He does an EMG and a NCV, both horribly painful. He can't understand why I am crying. As a final insult, he pulls the machine so far from the wall that he unplugs the machine before getting the data. Sends me off to the lab technicians in the office who do a much better job of the NCV test.

Back I go to the GP to ask for a referral to a different neurologist. Need someone who listens, who has compassion. She gives the referral.

New neurologist listens, does a workup, looks over the NCV results. Lots and lots of blood tests. I'm in the habit of asking the lab technicians if I should leave a pint.

Finally, a diagnosis! Idiopathic, axonal, sensory, peripheral neuropathy. Don't know why, but the axons, or connections between the nerves are under attack. By now the numbness has spread up my calves and is starting in my fingers. The burning is pretty bad.

The neurologist starts me on Tegretol, which I soon upped to 1000 mg. per day. He wants me to have a nerve biopsy, but I balk at it. So he sends me to a specialist in Atlanta. I think he wants the specialist to talk me into the biopsy.

I see the specialist twice. He orders an MRI to be done at home, which reveals two more herniated disks. He puts me on Nortriptyline to help me sleep. Finally he tells me to lose 30 lbs. or so. As if that will cure the PN.

Mostly, I'm in good condition. I can walk without assistance and the pain is mostly under control (unless a good weather front comes in!). Since I have three young, active children, I can't let this get to me. Have to keep going. Have to keep up with them. I'm not going to let this PN defeat me.

Fortunately, I have a very supportive husband and kids who know how to help Mom when her feet REALLY hurt.

I did have to change from driving a stick shift to an automatic transmission; couldn't get the clutch in all the way and made the transmission grind. I've made adjustments in the shoes I buy and how much time I spend on my feet. Getting to know others with this same complaint has been a sanity saver.

I have to take each day one at a time. Otherwise, I get burdened down with what I can't do, what I'm too exhausted to do, or what I should have done.

But I'm not going quietly into disability. I'll fight this disorder tooth and nail! Hang tough!


Linda B.
RLBennett5@email.msn.com


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