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-   -   axonopathy.. anyone (https://www.neurotalk.org/peripheral-neuropathy/110179-axonopathy.html)

diagnonsense 12-11-2009 07:44 PM

axonopathy.. anyone
 
So, for the last 2 years my neurologists have been telling me that my nerve damage has been with the myelin sheeth.

We do a nerve biopsy, and low and behold its not demyelinating at all.. but axonal.

I've been tested for diabetes, and the b vitamins.
Some of the rare funky blood testing was done while I was at mayo.. (I don't have the sheets in front of me, but they do all sorts of odd ones)

I have a primarily sensory problem, but its listed as "sensory-motor".

I'm young, which excludes me from a few of the catigories of things it could be. (cause age is a factor in some of them)
*I'm only 23*

... any ideas on what in the world it could be?

I feel totally lost now that its axonal and not demyelinating.

Kitt 12-11-2009 09:38 PM

CMT2's affect the axons. CMT1's affect the myelin. Hope this helps.

nide44 12-12-2009 09:18 AM

Many say they have had all the tests, but
A full list of tests for neuropathy can be found at :

www.lizajane.org

Betcha not all have been done
in reference to your type of problem.

mrsD 12-12-2009 09:58 AM

I find the terminology here rather confusing.

The axons ARE myelinated. So damage to them would affect the
myelin coat in some cases. Demyelinating means a progressive deterioration of the the myelin insulation...implying an autoimmune assault.

You can use supplements for repair if this is a temporary injury.
The Bcomplex including good B12 and fish oil, help repair myelin.

The MS community has put together a list for this:
http://www.msrc.co.uk/index.cfm?fuse...how&pageid=772

It is pretty long, and has some high doses, you may not need. So if you decide to help repair...let me know, and I'll start you on the most critical ones and we'll go from there.

Kitt 12-12-2009 10:03 AM

Quote:

Originally Posted by mrsD (Post 598961)
I find the terminology here rather confusing.

The axons ARE myelinated. So damage to them would affect the
myelin coat in some cases. Demyelinating means a progressive deterioration of the the myelin insulation...implying an autoimmune assault.

You can use supplements for repair if this is a temporary injury.
The Bcomplex including good B12 and fish oil, help repair myelin.

The MS community has put together a list for this:
http://www.msrc.co.uk/index.cfm?fuse...how&pageid=772

It is pretty long, and has some high doses, you may not need. So if you decide to help repair...let me know, and I'll start you on the most critical ones and we'll go from there.

Just to clarify for anyone reading this who has CMT, which is hereditary, yes, the axons are covered by myelin. As far as CMT goes in CMT1's the myelin itself is affected. It gets holes in it, etc. and eventually it will affect the axons.

HOWEVER, in CMT2's the axon itself is affected from the start. CMT affects the PNS whereas MS and MD affect the CNS. A person with CMT is born with healthy muscles. A person with MD is born with diseased muscles and MS is autoimmune as we know.

As far as other PN's go, I am not familiar with them.

mrsD 12-12-2009 10:37 AM

Yes, Kitt.... internal damage comes from mitochondrial failures and failure of the cell to live normally. (genetic failure)

Toxins exert this effect too, on the cell's interior. But also the myelin can be damaged from compression, stretching, or attack by temporary cytokines (inflammation agents made by the body)...and when that attack is over, it may be repaired.

Do I find the terminology used today rather confusing. I think it is a historical thing--medical terms coined in the past and continuing to be used today.

Kitt 12-12-2009 10:46 AM

Yes, mrsD, it certainly can be confusing. There is so much that they are learning now all of the time and it is hard to understand for anyone. We keep trying though :) I hope one day there will be a cure/treatment for some types of CMT but for now there is nothing a person can do. There is just no magic bullet, pill or the like. Thank you.

Raglet 12-12-2009 03:47 PM

hi there

from my hazy memory myelin sheaths SOME axons (not all) and it increases the speed of the transmission of the nerve. Someone please correct me if I am wrong.

All neurons have an axon, it is the tail that links the nerve cells.

I have sensorimotor axonal neuropathy, with extensive motor involvement and minimal sensory involvement (I am numb up to my knees). As it is said to be a die back process it is expected to start in my hands any time now that it has reached my knees.

It is not entirely logical though, as one hip is badly affected some of my hip muscles have given up the ghost and I can no longer lift my leg on that side, and my knee is starting to buckle on that side. I also have quite a bit of cranial neuropathy. (motor)
hth
raglet

glenntaj 12-13-2009 08:58 AM

Maybe, to clarify--
 
When the term axonpathy is used, most neuros seem to mean that the initial damage process is to the axon. Of course, if the axon is a myelinated axon, this "rotting from the inside out" will eventually cause secondary damage to the myelin sheathing as well, but the initial damaging process did not start there.

"Demyelinating" implies the original damage process is to the myelin sheathing--but if that becomes ragged there may well be secondary damage to the axon underneath.

For example, there are autoimmune neuropathies that are primarily axonal (such as those that are vasculitic/anti-nuclear-antibody in nature) and those that are primarily demyelinating (such as Guillain Barre and CIDP).

Neither is nice.

Kitt 12-13-2009 12:07 PM

Not nice but at least with GB the myelin comes back or at least most of it. A friend of ours had GB and it was bad. He could only blink, but he did come out of it but not the extent to being healthy as he was before. GB can certainly be bad.

For people with CMT who are reading this: with CMT1's the myelin does not grow back and over time it then affects the axons but that's a different peripheral neuropathy. It is inherited. One day they might have a treatment where it will grow back. With CMT2's the axons are affected directly. No treatment as of now for any type of CMT and there are many types. No magic bullet, pill, etc. and CMT is progressive. The symptoms also vary greatly even within the same family.


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