Report on Yesterday's Evoked Potentials test

[Guest guest]

I thought this was going to be an easy one. I was wrong.

The test (not including drive to UCSF and waiting time) was four

hours long. Only the first half hour, the visual portion, was 'easy'

to go through. The rest of the time was spent trying to stimulate

sensory and motor nervers in my hands and feet.

We eventually got sucess with my hands, and the stimulation was very

much like an attack of clonus. Because of my height and the small

space we were working in, getting that response took a long time. I

have spots here and there on my skull and limbs where the skin was

rubbed nearly raw to make sure we were getting a solid electrical

connection. By the time the hands starting twitching as they're

supposed to, I was in a lot of pain from back spasms, brought on by

trying to position myself in the necessary ways for electrodes to be

placed, tested, replaced, tested...

Then she moved on to my tibial nerve, which when stimulated at a

certain point on the inside of the ankles causes the big toe to

twitch spastically. Normally, what the test measures is a) how much

juice is needed to generate a sensation and the amount and

duration of stimulus needed to trigger the motor nerve and get those

big toes moving.

After giving me enough electricity to " have most people writhing in

pain " I barely felt anything but a sensation of heat. Then she

pushed the charged probe hard into the flesh, to make absolutely

certain the nerve was getting zapped. Now I could feel a bit of

vibration, but only faintly. The tech looked at me doubtfully,

said, " I've never given anyone this many amps. I'm going to try a

little more, to see if we can get movement. "

However, no matter how high she turned up the stimulus the

corresponding motor nerve was unaffected. To her knowledge, no one

in history of the test has had failed to have that motor nerve

triggered, just me. Ain't I special?

She assured me this would be emphasized in the report that goes to

my neurologist. If one assumes the test to be valid, the result

means advanced demyelination of a whole cluster of nerves in my

ankles and feet, rendering them not just sluggish but completely

unresponsive. A strong finding in support of MS or some other

demyelinating disorder.

That's what an Evoked Potentials test is, an attempt to chart

demyelination of nerves by measuring the response of the nervous

system to visual, audiotory and direct electrical stimulation. The

test is used almost exclusively to diagnose MS, and given to women

far more often than men (men are a small minority of MS patients).

In other words, while it will take a skilled neurologist to read the

visual and upper motor results, the lower motor results are already

in, and the verdict is near total demyelination of those nerves,

consistent with MS.

The drive back was difficult. I required immediate solitude to focus

on my breathing and try to get calm. I partly succeeded, had a long

talk with my oldest brother about it. His take: " we already knew

your nerves are all screwed up, every finding that makes that clear

to the medical 'powers that be' is a victory. "

I share that view, yet the whole thing upset me quite a bit. Bob

came home after work and wound up holding me for hours in bed, for

comfort, until I fell asleep.

We live separately, so he was gone when I woke up at 4am and my gut

was spasming. Barely made it to the bathroom several times - one of

those violent purges that just exhausts you.

When that subsided whole-body shaking began, and I was in no mood to

face it and immediately took a valium with a drink of water. Back to

the bathroom, then finally, half an hour later, shaking has stopped

and I can think and type well enough to post this.

I am not depressed or overwrought, just 'shaken', a word my frequent

bouts of clonus have given new meaning. Today there is nothing

medical scheduled, but the damn Housing Authority is coming to do an

inspection. Then on Friday my oldest brother will be here in town to

take me to an appointment with my new MediCal PCP. I am so grateful

not to be facing that one alone!

We're hoping that we can get leave that appointment with an order

for PICC line insertion. The prescription for IV Rocephin is being

processed by MediCal now, and as soon as it's approved we'd like to

get that treatment going. I'm at the point where I don't really want

to know much more about how bad off I am, until an aggressive

attempt to treat has been made.

This report is offered as nothing more than one person's experience,

but I do believe that experience has relevance for this group's

focus and submit it in that spirit, not looking for sympathy or

support.

I hope you're all having better days, and hope to be having them

soon myself.