Glenn..
Can you tell me what axonal neuropathy is in words I can understand. I've researched it this morning because we remember it being used to describe part of what they think is going on. But I can't understand what it really means. I am in a huge amt. of pain and brain is scrambled.

Thanks,
Billye

but, found lots of doctor double-speak.
I did find this site tho...
www.bmj.com/cgi/content/full/324/7335/466
If you scroll down a bit, there is a picture/graph that shows normal, demeyelinating and axonal nerve conduction studies and the differences. They sure do seem different! Of course the menu of viable treatments is, as ever, 'limited' at best.
I am crossing fingers and legs [can't do toes, sorry] that they mite try you on one round of IVIG to see if you get any relief at all. Of course, if you do..ask away about the pros, cons, s/e's, complications, costs, any and all-just name it! Hope it's worth a shot, at least! I for one am not sure which is better...my monthly infusions of 'nanobots' or chocolate. Pure heaven is both at the same time!
Hugs and warm breezes to you for now - j

That is a good site Dalek. I was able to understand it. Appreciate it.

Billye

Thank you for that I learned some things I didnt know. I havent been up on my research as much do to falling a lot and pain, so thank you Dalhek.

Dana

That's a great site. I hope you post it in the "Stickies" section.

"After exhaustive investigation no clear cause is found in about 25% of patients. Such chronic idiopathic axonal neuropathy usually occurs in elderly people and is often indolent, predominantly sensory, and length dependent. Patients can be reassured that, although their condition may progress, it will usually do so only slowly and is unlikely to become seriously disabling." (From dahlek's recommendation)


The nerve dies from inside, as opposed to demyelinating neuropathies, where the outer sheath is attacked. Think about a nerve being poisoned---either getting too much sugar, too much of a toxin, or not enough nutrition because of compromised blood supply. (vaculitis) The very long fibers generally die first.


From the Washington neuropathy site, the usual other causes are:

Amyloidosis
Ataxic Sensory + GD1b antibodies
Collagen vascular diseases (lupus, Sjogren's, etc)
Distal lower motor neuron syndromes
Distal sensory Perineuritis
Sensory + NF-H antibody
Sulfatide antibody-related
TS-HDS antibody
Vasculitic neuropathies

(On lizajane.org, I've listed all the tests for all the possible diagnoses that I could find for these illnesses.)

So far, the docs there are demonstrating they know what you have. But will they demonstrate they know how to treat you? That's what's keeping me on eggshells.

Dahlek--I think that article belongs in the stickies.

Love ya, your insomniac friend,

Thx for sharing your research resulting in the article/website. It's amazing how much I can learn and now know that I had symptoms of PN for much longer than originally thought. I simply ignored them because I was so busy living a life that I loved. When the pain became uncontrolable - well, we all know the rest.

Thanks again,
nancy-h
Idiopathic PN'er

Dahlek, please put that in Useful Websites!

You know for those of you who save/gather data, there is a program that
saves whole website pages as they appear, for you. It has a search function,
and is really cool. You have to manually paste the url in however, but that is a small inconvenience.

Since we lost data at you- know- where I have been saving links in
Evernote. My husband found this in a magazine article in Atlantic Monthly.
An author wrote that he uses it with success. And I have to say, it is
really good. I just put this article in my Evernote stash.
http://www.evernote.com/en/

There is a free version, which is what I am using. It is like having Useful
websites on YOUR computer. So check it out!

Here's an article published jointly w/ some other docs..... Helps you get a handle on what thinking patterns/attitudes are part of her thinking?
http://www.apctoday.com/article_page...AID=4499&IJID=
Will ferret out more if you want....don't know about YOU but I like to know as much about a doc making decisions about me as I CAN! - j

and my favorite 'non-med, but 'blood product=IVIG'
http://cat.inist.fr/?aModele=afficheN&cpsidt=15856776
Seems that in RABBITS they can tell that IVIG shows improvement for Axonal Neuropathies...Since docs can't even define PAIN or pain levels and rabbits can't talk...only other thing I can surmise is that they BIOPSY/test constantly to track improvments somehow. Just another case FOR?
another is:
http://www.springerlink.com/content/qny4dtp6ug0m0qc3/
I can't get into the journal article, but the summary is telling....maybe some others here CAN?
Hugs - j