I rambled in the other post....
Basically, the PN is progressing, it's idiopathic. Still "barely" within the "normal" range.
That's all I got!
Now what? Where do we go from here? What do I do now?
More meds? Get worse? Get better?
It's only been one year and it's gone from the balls of my feet to
all the way up to my knees
My hands and some of my face

O.K. all you "Veterans" where is this going?
I'm a "planner" like Mel, What can I expect? What should I do now?

HELP!!!!!

As much as it's traveled in recent months, if it's idiopathic neuropathy, your prognosis is actually good. Most people have very gradual change, and don't become severely disabled. It's no picnic, but it could be worse. I myself got much worse within the first year of having this, with involvement up to my knees, and including my hands. But then I went onto the healing plan you will find in the stickies, and over the past 5 years I have improved significantly. So have others.

Firstly don't worry about this test, its a walk in a park, its nothing to get worried about at all, the test is used to diagnose nerve damage or destruction, a Nerve conduction test is only a test of the speed of conduction of impulses through a nerve.
The nerve is stimulated with surface electrodes, which are patch-like electrodes placed on the skin over the nerve at different locations. one electrode stimulates the nerve with a very mild electrical impulse, you might feel a little tiny bit, thats all.

The resulting electrical activity is recorded by the other electrodes. The distance between electrodes and the time it takes for electrical impulses to travel between electrodes are used to calculate the nerve conduction velocity.

Brian

Exactly as Brian says. I had a nerve conduction test done last Friday. The little elctric zaps are minimal. She told me I have neuropathy, which I knew, told me I have carpal tunnel in both hands, which I knew, then she asked if I could tell which hand is worse and when I said the "left" she says, "Yeah, you are right, I guess you do know!" DUH!!!!!!!!!! Yet, they found no pinched nerves--said I may be experiencing spasms, but that Debbie has to read the test and get back with me. Debbie has not called yet. Al (Aklap) says it sounds like inflamation problems, so, tonight, I start trying Aleve to see if it helps.

My experience was similar to Liza Jane's, and my PN is small-fiber. It started out feeling like athlete's foot in both feet, rapidly getting itchier, turning to burning, followed by numb areas, intense surface pain, intense pain between the metatarsal heads, and periodic "electric" shock that kept me up all night for a few years. The pain ranged from 6 (hard to concentrate) to about 8 (excruciating) I could barely hobble back then, and had an application for handicapped parking at home ready to fill out (I never did).

In contrast, about 12 years later, I just came back from a vigorous 45 minute walk with my dog, about three flat miles. Yesterday we went to the San Diego zoo, up and down hills for three hours, came home, and walked the dog for an hour. As I type this now, my feet are tingly and a bit achy, a pain level about 1 or 2 on the 0 to 10 scale.

It's much better now, but I still have some pain, some partial numbness, general achiness below the knees, and occasional "electric" shock. For what I do for it, see the stickies. I have several posts there.

BY THE WAY!!!! THERE'S NO NEED TO YELL!!!!! We listen for whispers and keep those threads alive as long as needed.

Be patient. This is a chronic disease. It can get worse very quickly depending on the cause (ex., acute nerve poisoning or some infections) but that is rare after the initial acute phase. Noticeable changes usually are measured in six month or annual increments. That includes improvements, and many of us have experienced that.

My symptoms came on suddenly, first if right foot in mid Dec 06 (where I had had an ankle injury in March 06) by mid Jan it was in my left foot and since then has spread up my legs I an now in constant pain in legs, knees and ankles\all the time. It seems to be going into both arms and hands and now I notice I have pins and needles in my back. Waiting to have more tests (something called an Evoked Potential test) and hoping it won't get any worse.

Because my husband Alan developed neuropathy (very slowly) about 18 years ago, and when it became worse (though he was still able to drive a car and still go to work every day until he couldn't feel the pedals about 6 years ago, and had to go on Social Security disability), once they ran all the known blood tests, nerve conduction studies, diabetes (ruled out many times), ran this test, ran that test, etc. HOW COME THEY NEVER SUGGESTED A SPINAL TAP (which he had last month and it showed protein (LIGHTBULB MOMENT HERE).

Don't you think all those years ago, when they first said 'You have neuropathy, it's idiopathic, therefore, we don't know why you have it, we ran all the tests, and the last test (which will show auto-immune stuff), (WHICH YOU SHOULD HAVE) will be a spinal tap, and and if it shows protein, then this MIGHT lead us in the direction of an auto-immune problem).

How come no one ever said that? I mean, Alan had to wait 18 years to find out he most probably has CIDP.

I do not understand this. We saw every specialist, every internist, he took more blood tests than I can remember. (he did not take the extensive bood tests i.e. titers, ANA, etc. AND WHY DIDN'T THEY TEST HIM FOR THESE THINGS?

Years ago, they gave him a glucose tolerance test, took some x-rays, some nerve conduction studies, proclaimed him IDIOPATHIC, but never ever hinted at auto-immune.

I am just wondering if someone all those years ago had had the intelligence to delve further into why this man was developing neuropathy. I mean, you watch an episode of HOUSE, and they usually do a spinal tap in the first ten minutes. The guy who did Alan's spinal tap said "you have no idea what we can find out about a person from their spinal fluid". We find lots of goodies". That's exactly what he said to me.

Didn't physicians know this 18 years ago?? I am really perplexed here.

Anybody have any answers?? Thanks, Mel

P.S. Alan called me from the hospital last night. I was beside myself until I heard from him. Didn't know what happened to him. Finally he called saying "Just got the phone hooked up, DO YOU KNOW HOW MUCH IT COSTS TO HAVE A PHONE FOR 4 DAYS?? I said "no how much". He goes $53.00. I said "for a phone?" and he said "well, actually, it's the hook-up for the phone, the tv and a per day charge." I said 'I don't care, you get to watch American Idol and you get to talk to me". We both laughed.

So I'm off (we are having a blizzard in NYC right now. Imagine me going out, bent over like a pretzel from my arthritis, getting on an access-a-ride bus and going to see him (with my hot freshly baked muffins yet).

This should be an interesting day.

Speak to you guys later.

Melody

Bad news first...onset...when I was 'onsetting' , in the ER the PAIN etc went from jsut below my ankle bone to my knees...all of 14 hours! I was not considered critical..The ER doc found SX/Diagnosis on the 'INTERNET'. I then got a 'quack' of an ambulance chaser neuro and it took me 8 months to see the lite and get a 'SECOND OPINION'. I got the right docs and treatments after that, but I fear your FEAR is ruling you now. Swamp thru the Liza Jane stuff. All those tests referred to? Read all up about them. Learn that DIAGNOSING YOUR problem is all about ELIMINATING other stuff.. Then it 's a kind of patch patch patch thing as the world stands now. STRESSING over it all, makes it PLAIN OLD OLD WORSE! So chill, good person. I know it's hard to do when you HURT and have no idea what's gonna happen next! BUT, Hunker down, learn, listen and buckle to the learning about it all CAN and does help you w/all the FEAR this all creates! Don't understand some stuff? ASK! we've all been there tho thru different routes.....

I'd had this crud for a year before I got net-wise. All I'd found on the net, only confirmed what my INSTINCT of "not good" had been telling me all along, I'd followed my nose, and got good docs and treatments before I'd found the 'net'. OK SOOOO what's that mean? Follow your instinct! EVERYTHING I'd found here and thru sites I've posted in the stickies or other sources, well, they only CONFIRMED what was screaming in my brain and affirmed here. I wasn't NUTSO!

YOUR next steps are putting your fear aside and articulating in allmost doc's terms [never knew there was a language, but there is?] of what the heck is going on! How you feel, hurt, degree of hurts etc... You can't be whiney about all this, simply up front about HOW this all is a]hurting, b]limiting your ability to move w/o extreme pain and c]what is TO be done to enable me to continue life? Throw the ?s to the docs in WRITING! Pain/numb progression is one super beyond-scary thing! I've been there! When it got to my buttocks I was, well freaking? Beat IT!! and plan/expect to do so in the future! It's what we are, that substance of what we are, that will help us rise above it! Was it in the 'Enterprise/star trek' where one said we are 'STAR STUFF' I like that! Yes, there is hope, You just may need a bit of patience to find it?
Hugs and hope for the interim...... - j

--that Liza Jane set up those testing charts, and asked so many of us to contribute to them, is so hopefully fewer people in the future will be in Alan's (and so many other people's) position when experiencing neurological symptoms; too many doctors just order the tests they are familiar/comfortable with, and if these do not turn up anything that stands out . . .

With the charts though, the knowledge of many different specialties (and many different patients) is conveniently accessible, and there to be suggested and discussed.

Neurological symptoms can be caused by SO many things that perhaps it's not surprising that most doctors, even most neurologists, aren't aware of many of the causes and of the many different types of tests that can be tried. (The first three neurologists I consulted were not even aware of the connection between gluten sensitivity/celiac and neuropathy, for example.)
One would think they could learn--they have at least as much access to the info as their patients, one would assume--but many have little inventive to beyond the minimal requirements of continuing medical education credits.

Yes, it's damned stupid that no one suggested a spinal tap for Alan earlier. They probably didn't suggest looking for serum autoantibodies specific to peripheral nerve, either. And I bet no one ever suggested a polymerase chain reaction assay to check for a low-grade chronic infection, probably because he didn't have a fever or swollen glands and they didn't associate such a possibility with neural symptoms.

I do wonder, though, if a lot of this has to do with the possibility of insurance balking at extensive testing. I know when I started, my insurance balked at some requests. By that point, though, I knew to flood them with relevant Pub Med and other articles on the possibility my symptoms could have certain etiologies, and they relented every time. Insurance companies hope people go away when turned down, and generally don't have the stomach for a determined fighter who'll talk about it all over the Internet and make them look like Scrooge.

In essence, one has to hope one has--or specifically locates--doctors who are very well-versed in the field and are up to date on the research; they are generally at research hospitals or centers. The bad news comes when one lives far away from such places, or has no insured access to them.