Re: Report on Yesterday's Evoked Potentials test

[Guest guest]

" 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 is the part that were all hoping for in your case. I just

hope that they'll give you an honest effort. Actually another member

that doesn't visit frequently had some serious IV treatment that

amazed her neurologist, so hopefully we can amaze yours.

tony

> 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.

>

>