looking for information- SFSN
 

Hi to all of you, who are my friends since the onset of my idiopatic SFSN. the only test that showed my neuropathy was the skin biopsy with moderate reduce of nerves.
Can one knows if the reason is from some problems with the gangelia, or nerves roots or it is only the nerves end?
My major problem is a kind of numbness all over my body- like my flash is dead, also burning pains, which happen mainly when I'm tired.
Who else here on this board suffer from the same symptoms?

I take no madication but supplaments such as B12, D, fish oil.

Need your support, sometimes I feel so lonley.

One can get--
 

--very similar small-fiber neuropathy symptoms both from the "traditional" "die-back" type of small-fiber neuropathy, in which the most distal nerve tips are damaged first, and from gangliopathies, which mean the cell bodies in the dorsal root sensory ganglia get damaged or die.

Generally with the latter, there is less likelihood of a skin biopsy showing a length dependent die back; that is, of the nerves at toes/feet showing more damage than those at mid-calf than those at mid-thigh and so on. Gangliopathies may cause diffuse damage, but more globally--nerves all over the body are affected at more or less equivalent rates.

What is 'flash is dead' ?
Did you mean flesh...(skin)?

sorry for the bad English.

Amit, I hope you don't mind me jumping in on your thread, but yes, I am experiencing similar pains to yourself and wanted to run my question past Glenn following his response to your post.

Glenn, As you may remember, I too had the acute onset global burning and increased sensitivity/pains in hands etc. What I would like to figure out is, (without the help of any doctors or Neurologists it seems, as we don't do skin biopsy in NZ and as all blood & basic physical neuro exam results are 'normal' I'm now on my own, apart from this forum) anyway, my question is: the pain starts in hands and also my feet (shooting/aching), so, 'distally' and in a length dependent fashion yes, but then within days the burning started, first in the thumb, then hands, forearms then everywhere within a couple days, which indicates 'non'-length dependent, correct? so, is it possible to have a length dependent AND a non-length dependent problem starting within days of each other?

What I am hoping is the apparent damage is *actually* in the peripheral nerves (or the nerve endings) which may in time regenerate, not the Dorsal Root Ganglia. But being that my burning is pretty much all over in varying degrees, as we have discussed before, it is likely to be a DRG problem? or is it at all possible that this global burning *could be* truly peripheral in nature, indicated by the distal 'die back' nature of the hand/feet pains? I hope I'm making sense.

As I know it came on quickly & globally for yourself, and you have made a partial recovery so far. Has it ever been verified that it was a DRG problem, or a direct reduction in nerve fibers locally ? I think I read you did have a reduction in epidermal nerve fibers, does this 'rule out' ganglion involvement in your case?

A reduction in intraepidermal nerve fibers--
 

--found by skin biopsy could be from either a "typical" length dependent small-fiber neuropathy or from a gangliopathy; the distinction, as Dr. Abhey Moghekar of Johns Hopkins wrote to me, following my finding of one of his papers on this, is that typically, with gangliopathy, oen does not see the length dependent gradient. The percentage reduction in fibers is roughly equivalent from whatever part of the body the skin sample is taken, whereas with length-dependent neuropathy one expects to see much more de-enervation at foot/ankle than at thigh or elbow.

This is because in gangliopathy, when cell bodies die, the fibers disintergrate as well, and there are fewer left in the skin samples.

Of course, there are wide variations in this--it's hardly an exact science, and much of it is theoretical. Even Dr. Moghekar said to me that, given current imaging technology, it would be very hard to confirm a ganglionopathy, as those structures are too small to be imaged; he said, with what I consider typical neurologist humor, that confirmation awaits my autopsy.

On the other hand, I suspect that there are axonopathies that are not length dependent and are not necessarily gangliar. Especially when there is acute onset, toxic and autoimmune possibilities should be suspected. A more vascular etiology, such as in diabetes, would likely start garadually, and be more likely to be length dependent, because it is vascular insufficiency that is killing the nerve fibers, and that happens first in the areas farthest from the seat of blood circulation--the heart.

I too had a start in my right foot, but it spread to my whole body in days. So, was it technically length dependent, but just very acute in onset? Hard to tell.

confusing
 

It is so confusing and also very disapointed that still the doctors don't know what to do in such cases.
I worried about the future and for meanwhile don't want to take any medice since they don't cure the neuropathy but help only to the symptoms.
I don't even know what to do to help myself and avoid any further demage to the nerves.

Meds help you to live a 'normal' and pain-free lifestyle
until a 'cure' can be found. You have a chronic disorder with no known cure.
If you like pain, then stay away from the meds.
Me, I don't like pain and am willing to compromise
to live as pain-free as possible.
You will continue to injure your nerves by drinking alcohol in any amounts, too much vit B6 will harm your nerves. Stress will harm your nerves and cause flare-ups.

Was your skin byopsy performed on your feet or on your legs?