as I've a cancer friend who's helped me w/THAT, and I with the neuropathies. We share in a somewhat symbiotic relationship as we both learn from each other?
For me the neuropathy came first, then the cancer. Fortunately mine was contained, tho whether the Nuropathy's were caused by the cancer or not related is not determined, as, unfortunately treatment for EACH is, essentially THE SAME FOR EACH!!! Surprisingly, many, many of the advances in learning about neuropathies are due to a bunch of smart, and vocal cancer patients? Yet, some docs [ocons] don't have a full knowledge or complete up-to-date knowledge on the AFFECTS of chemo to the nervous system. Conversely many neuros haven't a clue about chemo other than treating the results....meaning the nerve damages.
All I can ask you is, were you really warm or cold during either the first or second set of nerve conduction tests? Reason I ask [believe I'd posted it about 6 months ago] is a paper written by the head of an area neuro dept here that indicates tests can come out INCORRECT due to YOU being too hot or cold....Temperature and nerve conduction varies during hot or cold times!

Here is a site all about what are called 'Toxic Neuropathies' -Chemo is one of them: http://www.neuro.wustl.edu/NEUROMUSC...ther/toxic.htm

Ask questions away after trying to figure this one out...I believe you WILL see some things there that will give you clues....If you want more references, I can find them....Hang in there! - j

That's very interesting.

I have a question for you:
When I had my nerve conduction tests they showed that my right leg had the most loss of conduction. (sorry, I forget how to use the words).

But at the same time the toes on my left foot were the most numb and extremely hard to move.

When I asked my neuro about that, wondering why if the symptoms seemed so bad in my toes, they didn't show up more on the tests.

He said it was because in order to measure there have to be two points, and there isn't any point beyond the toes...

Have you any insights? Experience????

I know I have to keep my feet warm, but it's often hard to do since they don't seem to register temp very well any more.

Thanks to everyone for their support and feedback ... your comments have been most helpful and supportive. And a real serendipity!

Dahlek had an interesting question about my last post ... asking whether I was cold or hot during the nerve conduction tests. I hadn't thought about it before, but I was warm during the first test (02/20/06) and it was much cooler during the 06/06/07 test. My wife who, is a real authority on cold temperatures, verified this. Do you think that might explain the differences?

The cancer possibility as a PN cause, is also very interesting. But, so far, I think we've been able to keep the cancer from metastasizing (invading the bones) ... although I'm not sure if that completely eliminates the possibility. The cancer treatment, Hormone Therapy (ADT), is not really considered chemotherapy but it might very well be a factor, since it has numerous side effects, including osteoporosis, muscle atrophy and muscculoskeletal pain. (One of the other side effects is that I now enjoy going shopping with my wife) But seriously, Hormone therapy coupled with the spinal damage might even be more of a factor. But who knows?

Anyway, learning that the same neural symptoms can stem from damage to peripheral as well as from spinal damage, (from Glenntaj and Rose) certainly covered one of my big blind spots.

Like some of you, I also believe that a lot of these docs don't have a clue when it comes to the new techniques and drugs available. I've found this very true in the treatment of my spine problems and in the treatment of my peripheral neuropathy. Either they don't know, don't care, or are too damn busy to answer your questions. And my old uro doc, is a good example of this ... like when he told us there wasn't much more available when my ADT started to fail. Fortunately we found a great medical oncologist who looks like she's getting things straightened out.

Maybe someone can help with this ... I've been trying to talk with someone who has, or is presently using this Spinal Cord Stimulation treatment or maybe find some test material. it's an implant like a pacemaker placed in the lower back with wire running up the spine. Electrical impulses then block pain signals before they reach the brain.

Guess I'd better stop now, it looks like I'm in a rambling again!

There were a lot of other kind words and comments I didn't acknowledge ... but to all of you, thanks so much.

gerry

that AS MUCH AS WE would like it, the diseases, the treatments, the medications, the philosophies to approaching any ONE aspect are soo complicated that to find a doc who is up-to-date AND can connect all the dots that cross over disciplines is like looking for needles in haystacks?
What WE can do, is try thru learning of others' experiences good and bad about HOW best to approach any given doc...THEN NOT GIVE UP!
Hot/cold on nerve conduction tests - I'll have to dig up that site and post it again....It's been about 3 months or so...But I for one do know that temp. during the tests does make a difference...My last Nerve conduction test I really complained of cold...doc tried to rub my icecube feet warm...You do NOT rub my feet too much or I want to knock yer block off? I suggested that he get a hand-held hair dryer rather than take the room space heater up onto the table...You get the drift...As for AI's not being 'hormone therapy'? Go to any BC site and see what they have to say....I believe it IS as much a chemical manipulation [falsely presented tho] and any radiation therapy there is...s/e's are similar tho permanent damage is far less [whew!]
I'll refer you via PM about folks who've experience w/the spinal stim stuff...
Consider? Maybe when I post this article things mite make more sense...sure hope so.
Well, my turn to ramble is done - j

Dahlek mentioned that she thought the temperature was important. It is. When they did the nerve conduction tests on my hands, they actually had a big pot of water that they warmed to a certain temperature to warm up my hands before they did the tests. The neurologist told me that the temperature must be warm for the tests to be accurate. This test was done at a big medical facility that is a teaching site for doctors. This was done about 2 years ago.

Maybe they are finally teaching the new neuro's that the temperature is important.

Billye

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

This is a 'local' article written by the head of the neuro dept at George Washington Univ. Hospital Center. I'd found this while checking him out prior to a 'referral' opinion visit. We could actually 'discuss' issues. How convincing I was is yet to be determined. I don't know if we will ever see the 'results' of that discussion for another five years...if/when a paper comes out. Such docs ARE made of publishing tho... - j

I suppose my only comfort[?] was the 'cold' nerve test showed worse things happening [which they were] than a comfy one?

Silverlady - we can always HOPE, or complain that "I'm cold!", even when it to others doesn't seem so...When I'd a recent PET scan for another issue....I warned them I HAD TO BE WARM or I'd shiver too much...their blankie heater had broken, I'm surprised they got any good pics at all...I was one cold-vibrating person! - j

Oh Gerry, I love your post. What a wonderful attitude.

You unexpectedly made me laugh.

I was thinking about how overwhelmingly serious things were when you made me laugh.

Gosh, I admire you.