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.

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

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.

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.

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.

diagnonsense it sounds like you suffer from HMSN Type 2 (Heriditory Motor Sensory Neuropathy Type 2 Axonal) Hope thats helps.

HMSN is another term for CMT. And there are many types.

This may be a dumb question, but, are EMGs abnormal in any of the CMTs? Or is it strictly small fiber and only found on skin biopsy?

In CMT1's EMG's are abnormal. In CMT2's they can be almost normal. Here is a site:

http://www.charcot-marie-tooth.org/a.../diagnosis.php