EEG's & MRI's will only show large fiber disturbances in the tissues.
If these are 'normal' and show no problems, the gold standard for small fiber
damage confirmation is the skin punch biopsy. I have one done every 3-4 years to check on the level of damage.
I've been able to keep it in check without significant additional damage for the last 6-8 years.

My neuro first diagnosed me by saying:
I've good news & bad news.......
the good is that you are continuing to grow new small fibers.
The bad is that your neuropathy/fiber destruction is faster than the new growth.
If we can halt progression, the new may just catch up, someday.

Knowing what type of neuropathy (mine is sensory, length dependent, axonal, small fiber, polyneuropathy) does affect the type of treatment, to some extent.

My diagnosis is pretty much the same as yours, Bob, except I have not heard "length dependent" but I have heard "demyelinating." What type of treatments have been tried for you? I am hoping that there is something that will come from my next visit at CC as I am not ready to throw in the towel on my career. I spent too many years in college to give up on something I am so passionate about :-(

I am new to this site. I have posted a thread asking for advice about the next step to take in my treatment. The local neurologist I visited only did a very simple sensory test - I would like to find someone with more resources and suggestions for treatment. I live in the Southeast - do you have any knowledge of local centers - Vanderbilt in TN or the New Orleans center? I would like to get the best answer possible - my neuropathy is due to a single event not due to diabetes. I would appreciate any info you could give. Thank you for sharing your journeys.

I don't know the proper terms, but the length dependant has something to do with the distance from the CNS. Feet & hands are at the greatest length or distance.
Demyleinating is when the myelin sheath is deteriorating. Many small fibers don't have a sheath, just an axon- so.... 'axonal' rather than "demyelinating".

Treatment?
Just meds and supplements is all they (at Hopkins) seem to be able to do for my problems. I sometimes think that I've been more instrumental in my aggressiveness to my treatment, than they have.

Hi, kpRN -

The skin biopsy procedure is really rather benign. It is done by the punch method, same leg, either two or three sites starting just above the ankle and ending at the upper thigh. Really doesn't hurt, but the instructions for aftercare done by you is at home is important to prevent infection.

Mine was positive for non-length dependent small fiber neuropathy, and I have Sjogren's Syndrome where this type of neuropathy can occur.

Good luck,

Sheltiemom

I had 3 done- lip, foot and upper leg. upper leg now numb. n6 to 8 inches around site. foot dead around site. do pain. BUT the lip bio, they go deep. aIt broke open 3rd day and they told that it would not pay to sew it up.
So now I have a big scar on inside of lip and at times it hurts like hell

I also had 2 operations for my sleep apnea---UPPP- most painful.
upper and lower jaws broken ans extended10cm out I breath a weeeeeebit betteer but my face hurts as much as my feet. Which caused me to try all the drusg on the market. I always stay with methdone 60 to 120 mg per day and 40 mg 0f hydrocodo and what ever is hot6 at the time But you got to try
good Luck hm

--sound very unusual--first time I've ver heard of that much spreading numbness--was it a SKIN biopsy?

Skin biopsies for small-fiber neuropathies involve very shallow samples--generally only about 1mm deep and 3mm in diameter (smaller than a pencil eraser). The biopsy sites are small enough to be covered by a little round band-aid.

I wonder too if it was a skin biopsy which is not invasive. However, a nerve biopsy is and it can leave numb spots as it is invasive. They usually do not do them anymore. At least they are not recommended for a person with CMT. A skin biopsy is the way to go for us.

[QUOTE=glenntaj;670094]--has never been a fan of skin biopsy--I suspect i

In many such acute neuropathies, the process is monophasic--the theory is that once the immune system wipes out all the targets, the process stops.

*** Can you describe what you mean by an "acute" neuropathy? I've always thought "acute" meant sudden. Mine developed slowly (maybe 4 years of the tingling before I got around to investigating). And I know my condition is now "chronic". [But perhaps was triggered by acute potassium and B12 deficiencies.]

CB[/I][/I]

Is the lip biopsy a labial salivary gland biopsy? Is that possibly what they did? That doesn't sound like a biopsy for nerve density.

I had a muscle biopsy, that was deep....

Skin biopsy for nerve fiber density, which I also had, was done at 4 sites and was superficial, a punch biopsy similar to a mole removal. It was very easy compared to most of my procedures. They just clean the area, numb it and they do a punch. Mine was done at the medial area of the ankle, medially, just behind the knee, inner thigh and fore arm, near the elbow-medially. It is not anything to even worry about. My results took 6 weeks.

Lip biopsy for a salivary gland IS painful and does take a few weeks to heal. I had that done to. They look at those for Sjogren's and for Amyloidosis.