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

Karen, the thanks button is new to me too, but i am 100% sure it only thanks under the post, what i meant was a simple " thank you to all " in a post, just to acknowledge those you replied to their question, i am sure you follow my drift.
What i don't understand is how could anyone find a forum, register, and work out how to post on a subject but didn't have the abilty to see the reply button

--do they stem from spinal damge, from damage to nerves farther down the periphery, or both.

The problem is, the exact same neural symptoms can stem from damage to peripheral vs. spinal damage--although, technically, damage to the nerve ROOTS from spinal stenosis/arthritis is radiculopathy (from the Latin for "root"), which is simply a subcategory of peripheral neuroapthy, which, as Rose suggests, involves any sort of damage not to the brain or spinal cord proper.

You would not be the first person around here to have both spinal problems and peripheral neuropathy problems contributing to symptoms, though. There is even the "double-cursh phenomenon", in which a given nerve pathway may be impacted both at the root level and farther down the periphery, and while neither insult individually might result in symptoms, taken together enough of the signal is disrupted to cause them.

This is why the search for the causes of neural symptoms is often a long, expensive process of elimination, and may not yield definitive results--especially when it comes to EMG/nerve conduction studies, which, as Dahlek notes, may well depend on the temperature in the room (this has a marked effect on nerve conduction) as well as the electrode-placing and intepretive skills of the tester.

You mention a few terms early on. You now know about "peripheral neuropathy" versus "radiculopathy"; "axonal" refers to damage to the nerve fibers themselves--the axons--and "demyelinating" to damage or stripping of the meyling sheathing surrounding the larger sensory and all motor nerves. One can have "primarily demyelinating" damage that allows the axon to be exposed to problems, or "primarily axonal" damage that results in demyelination from the inside out. Small-fiber neuropathy--damage to fibers that subsume the sensations of pain and temeperature--is by definition axonal, as these fibers are so thin they do not have myelin coverings. You may also see terms like "mononeuropathy" vs. "polyneuropathy"--one nerve versus many.

I suspect you have effects both from the chemotherpay and your lower spine--and your chemo regimen may well have contributed to/exacerbated your lower spine deterioration.

Okay... chronologically: you come, register for a big forum... then you find topics and write things and then you go do the dishes or something.

If your memory is really bad, you may not remember how you found the big forum.

If you remember that you found it, then you may be able to go to your emails and the activation in order to go back to the forum.


When I first began joining forums my memory was so bad that I didn't really remember... the things I had in mind were what I could see. It was very scary.

So, if that's how someone is, or even somewhat like that, then they aren't going to actually be able to go back and see if there are any responses.

If your memory is good, then I'm sure you wouldn't be able to understand how debilitating (socially) it is to not be able to remember.


I'm soooo much better now. But, I still try to remember to sign up for instant notifications... that way I can just click to get back to the topic... I don't have to find it.

See, the other thing with cognitive dysfunction, is that "planning" is really hard when memory is so impaired.

I still can't remember very much at one time... I don't have to keep repeating something in order to be able to do it, but when I have several things to do it's like a wind storm in my mind... it's not clear and it's unsettling.


To me, stress is the worst. It just uses up so much energy... and I think the using up of that energy is what burns up nerves... once the lubricating B12 is gone... that's sort of how I explain it to myself.

The stress is so bad with my condo, given that the courts have denied me due process, that it's sometimes hard for me to justify my continued fight.

I posted a topic in Social with a link to pictures of my condo.

I would love it if people took a look.

Would you?

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

If a persons memory was impaired you would think that the good old pen and paper would come in real handy, i do it myself still, i couldn't possibly remember every site that is important to me, if i didn't use " my favorites" or just dot it down on a bit of paper.
Anyway most sites that you register, you do get an activation number telling you the name of the site and all, all you have to do is open up your emails, if you forget your password or forum name you only have to enter your email address and they send out another, how easy is that ?

This is way off track to what i meant in my post, i am not picking on anyone with a bad memory that's not my style, i was saying that i have seen some of the good people here put a lot of work in their answers to help someone who has asked for help, then no reply,then say 2 weeks or 2 months down the track another post comes in off the same ignorant person and same thing happens again, no answers, no thankyou, nothing at all, that does get to me because these terrific people here are in pain themselves but give their all to try help others out but just get ignored, thankfully it does not happen often.