Axonal Neuropathy
 

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

Billye, I searched for a definition....
 

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

I got it..
 

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

Billye

really good article
 

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,

dahlek
 

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

I agree...
 

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! ;)

A bit more info on Dr Mauermann...
 

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

OK another one...but relates to 'rabbits?'
 

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

It's in the Stickies now.
 

I know I've seen this article before, and thought it was already in the Stickies, but it wasn't, apparently. Thanks to Dahlek for pointing it out.

LizaJane is accurate--axonal neuorpathy means that the primary damage to the nerve is to the nerve fiber itself, whereas demyelinating neuropathy means the primary damage to the nerve is to the insulating surrounding myelin sheath. Both kinds have multiple causes, and the Washington University at St. Louis Neuromuscular website that LizaJane references is a good way to get a comprehensive list:

http://www.neuro.wustl.edu/neuromuscular/naltbrain.html

(This one I know I put in the Stickies.)

I say "primary" because it is entirely possible to have primary axonal damage and secondary problems with the myelin--when the axons degrade, myelin has less to adhere to, and deteriorates--and the reverse can also happen: primary myelin damage that gets severe enough to cause the now uncovered axonal fibers to also break down.

Experienced electrodiagnosticians can often tell by NCV/EMG testing results whether the damage is more one or the other, as each tends to leave somewhat characteristic fingerprints.

Small-fiber neuropathy is by definition axonal, as the fibers that subsume pain and temperature sensation, and many autonomic functions, are very thin and have very little or no myelin sheathing.

All motor fibers are myelinated, as are major sensory fibers underlying sensation of mechanical touch, vibaration, and kinesthetic feedback.

To get even more technical, one can have a neuronopathy or gangliopathy, in which the cell bodes in the dorsal root ganglia are actually attacked (which may cause axonal/myelin deterioration further down the nerve cell). This is quite common in Sjogren's and paraneoplastic syndromes. It's not technically either axonal or demyelinating, as it does not "first" involve some portion of the nerve fiber.

There's also the term "radiculopathy" referring to damage to the nerve roots on either side of the spinal cord--the first nerve "bundles" that connect to the cord. This is technically a peripheral neuropathy, as it is not central nervous system damage per se, but is often considered an adjunct to dysfunction of the spine.

Complicated, yes.

Glenn, thanking you so very much...
 

.. for 'making it so'... as they say.
My point is, to get for BILLYE the reinforcement of a possibility of IVIG as a TREATMENT...!!!!!There are odds in the treatment, but, I weighed MY odds at the possibility and found that it was: a]less chemical vs. meds s/e's; b]prednisones were a desparate option for me, due to a pre-peri/osteo condition, which due to other conditions makes osteo a prevalant concern; c] nature and progression on my onset and d]research indicating that while the 'odds' indicated it mite not work, the 40% overall chance that it mite, was worth the shot.
Knowing all this, my readings STRONGLY indicated that it might be a 'chronic' condition for which, IF SUCCESSFUL, would mean an 'ongoing' or perpetual treatment...Given the costs and availabilities of IVIG, there are serious decisions and ramifications in such decisions of commitment...COSTS, S/E's Insurances, Potential infections, well you name it.. YOU PUT A FOREIGN BLOOD PRODUCT in your body [for your own well-being of course]..Well, not to be aware of the alls, in alls, well, you really have to be a dunce! Education is what all this site is about! Pain relief or decrease of the slew of progressions is another! I have found my route-the IVIG. IF it is removed for whatever reason.. well, you will hear about it?
I am severely disappointed w/all of Billye's Docs that they've not tried it. At this point, COST be durned! IF it works well, HECK GOOD! Why NOT? Since I'm a victim of a doc that 'Didn't do anything' and had to change docs that DID, my Concerns relate to those who COULD have gotten the RIGHT treatments right at first and avoided all these complications! YES I CAN BE MAD ABOUT THE INCOMPETENCIES! Are they leagally liable, from all I've read [a LOT] no, but are they to BLAME? YEP.
OK I have vented...
LETS GET BACK TO WHAT IS GOOD FOR BILLYE? Please? - j

apc
 

dahlek--that apc article also belongs in the stickies. There are REALLY REALLY good pieces you are finding!