does anyone else have demyelinating and axonal features with thier neuropahty
 

The neurologist wants to check for autoimmune issues now. When I read my NCV report from back in July it showed slowing of ncv and prolonged distal latancies in the peroneal, sural, and the tibal nerves. I have prolonged
F-waves of both peroneal and tibal nerves in both legs the right peroneal F-wave was absent. That to me suggests a primarly demyelinating issue by what I have read online about it. My CMAP's were normal expect for the peroneal nerves, this is the only thing to me that suggests any axonal involvement.
If anyone has this issue any advise would be greatly appriciated.

I have senorimotor axonal neuropathy caused by my lupus. I have had it for a while now, and it has spread up my legs to one hip. It's about to start in my hands (they can tell from the nerve studies). Doesn't seem to matter how much treatment they give me for my lupus, my neuropathy just keeps on doing it's thing. But I have got used to it, and a waiting for the funding to come through for hand controls for my car. Really looking forward to that.

hth

raglet

People whose presenting etiology is demyelinating--
 

--often get secondary axonal damage; once the myelin sheathing of nerve trunks is deteriorated the axon is exposed and is vulnerable to stretch injury and other damage.

The good thing is, it's much easier, and faster, to repair myelin damage than it is to repair axonal damage, provided that one can stop the damage process.

You are NOT alone...
 

Good thing about this place? Is that lots of folks will help you get thru it all? Either diagnostically, metabolically, physically or just plain old supportively.
I've got an auto-immune neuropathy...and a couple other AI things going on too? But none, seem to be inherited.. WHEW? sort of... You simply go thru all the steps and tests and hope you find out that 'something is really wrong with you- AND it's got a NAME'. Beyond that? Sometimes having a name, doesn't mean a 'cure'. But, with the name? You can get some sort of treatments that either keep it from getting worse? or help you get by.
USE your mind to work on your body and help your nutrition and give yourself the best opportunities you can to 'get better'. And, realistically? Don't be crushed if there are set-backs. There always are...some of our making, others of unknown origins.
Thing is? To keep at diagnosis then treatment and keeping SANE! Easier said than done? But many here have been around that block a few times and more! Hugs!:hug::hug::hug:!!!!!! - j

Searching for others
 

My husband is 43 years old and was diagnosed with peripheral neuropathy about 11 years ago. It started as pins/needles and numbness in his feet..then hands and has now moved up past the elbows and knees. He has much difficulty grasping or feeling objects in his hands. Losing all muscle mass. Has drop foot, and his left ankle rolls to the side alot causing him to trip and fall.

Until a month ago, he has not had any pain with his neuropathy. That has now changed. He has become so disheartened with his physical condition that he has even conteplated sucide. He has now been diagnosed bi-polar, so we are hoping that will aid in the treatment of his depression. We really don't know what else to do.

We have been to Atlanta (Emery) and to Vanderbilt. All the doctors we have seen have been stumped. He has been tested everyway since Sunday and no one is able to diagnose the cause of his CIDP therefore, the doctors do not know how to treat him. He received 6 months of IGIV treatment, but no success. He has tried B12, Alpha Lipoic acid and Benfotiamine, Lyrica...but again no relief. He is now on Cymbalta and the dr. prescribed Neurontin. He doesn't want to take the Neurontin because he said it makes him feel fuzzy than he already does.

Any suggestions on how he can take this medicine to avoid some of the side effects. He is concerned that the CIDP is now affecting his brain and memory.

I am hoping to find others that have/are experiencing the same or similar symptoms and can give some advice.

Neurontin fuzzies usually dissipate in a few weeks to a month,
so you have to give it time. Also it should be titrated up to recommended dosage,
in step. Starting at a low dose, maybe 100 mg 3x day increasing every 5-7 days
by 100 mgs per dose until a total daily of 1800 to 2400mgs/day is achieved.
I switched to Lyrica after attaining a max daily of 4,200 mgs/day.
Lyrica ia a bit stronger at lower doses, so its harder to start out on.
25-50 mg 2 to 3 times a day would be a starter dose,
but equal to 3-4 x that in neurontin.

I have sensory motor axonal PN with demyelination. As Glenn stated if you have axonal deterioration eventuall the myelin sheath will be affected too, the converse is also true if you have demylination the axon will eventually be affected also. I guess that an emg early in the process would differentiate which came first. Mine is primarily axonal.