They're listening! I've been telling my Neurologist that things are continuing to progress, we are not slowing this PN at all. He finally believes me and has decided to do another Nerve Conduction study and compare it to my last one done in September. That will be six months. Long enough to show marked progression.
Before it was mild, just in my feet and up the sides of my legs. Now, my hands and face also. They have done two MRI's and haven't found anything in the brain or neck area.
It does make you feel a little like it is all in your head when they can't find anything that is causing all this pain, but c'mon! Where the hell is all this pain coming from?

I'm on the highest dose of Topamax he can give me and it's still not enough!

No whining today, I'm just here to ask a few questions... When he does the test, should I go without medication before the test? If so, how long before? I don't want to numb my nerves for the test, I want them to get a true reading. However, I don't know how long I can last without medication. I'm in SEVERE pain without it.

Geez, now I have to paint my toe nails and shave my legs too! Can't have them seeing me with "winter legs"!

Stay on the topamax for the nerve conduction testing. I am sorry that topamax is not enough to keep your pain in check. Most of us are on two or more meds. So, talk to your doc about complimentary medications, like an antidepressant etc... I am on cymbalta, neurontin and lyrica. The addition of lyrica was a god send. I know other folks are on other meds like Ultram. Nerve pain is extremely difficult to manage, but it can be done.

Take care Laurie

staying on the meds AND showing changed nerve #'s is either one BIG carrot or stick to get your doc to change his approach to things. It'll also prove you're not crazy! - one VERY gratifying thing except for the reason for the tests.

Just be very SURE you don't get soo cold prior or during the testing as that could give you 'better' numbers than you want.

Let us know how you survive the 'test' day! - j

Does being too warm or sweating or having just exerted yourself make the numbers worse? just curious.

Heat, in general, is the enemy of myelinated nerve impulse conduction. Nerve conduction studies and EMG's are supposed to be done in an area with a constant and somewhat cool temperature, so that the patient's actual conductivity can be discerned under optimal conditions. Too much heat or humidity actually increases the resistance of the nerves to the conduction of the electrochemical impulses.

This is a well-documented phenomenon in physics--electrical conductivity reduces with temperature. Superconductivity is a low temperature phenomenon. It has to do with keeping the atomic motion down to a low enough level that the atoms line up in a way that electrical charges can traverse them in the least resistant way possible.

People with MS have known about this for a long time. Most say their symptoms increase with heat or sweaty exertion. And cooling vets are a staple in the community.

http://www.onecallmedical.com/PDFs/E...0ISSUE%205.pdf

I found this when checking out area neuros.... - j

Good article Dahlek -

Seems Like Stiches... every time I've seen a new neruo they have done their own testing - the best ones always control my skin temp with a heat lamp and make sure its consistent - I was going over records the other day and found I've had 10 of these tests in 7 years - because the PN has kept marching on - but never was told by any doc to worry about meds prior to test..,,,

(for the those white "winter legs" -self tanning lotion!)

Good luck

This was the neuro who'd questioned my diagnosis stating I should be in a wheelchair if I Really had IT. I then quietly outlined that A,B, 'n C were happening and that I'd probably done D,E & F in time to prevent wheelchairness. He went 'Hummm, hummmm' a bit and said definite 'maybe'. For a chief cheese, not bad, I'm thinking. Some docs just write you off as either crazy or from 'internet-land'. I think he didn't agree wholly as the diagnosis was from the chief cheese at the other big teaching hospital round here. [not Hopkins]

Thanks to all the good folks here I went in 'armed'. Soo, SLS, I have hopes for you and what may come. Tho, I hate to wish results that show deterioration on any soul, it might just get you the treatment you need, and relief as well. Any relief is GOOD! - j