For all you "rare" Non-Length Dependent experts out there........

Please help me sleep better tonight.........

I read a previous post from Glenna saying her Doc at John Hopkins, feels this type of neuopathy may not have the possibility of healing as axon cells are dead.

Is this if the NLD SFN is caused from a disease property ex: Sjogens, etc..... or is idiopathic also included in this grim verdict?

2nd Question: Is it likely that NLD SFN can progress to Large Fiber Neuropathy/Sensory and or Motor?

As of now, I do not have large fiber (1 1/2 years after onset).

Any info would be greatly appreciated. I have been doing a lot of internet searching only to get more confused and upset.

I would ask how this doctor knows the cells are dead.

I don't think anyone knows anything for SURE about many types of PN. It is a very variable problem, and there are always surprises.

Doctors NEVER know anything for sure.

Here is an article on diagnostic error rates:
http://www.patientsafetyauthority.or.../Pages/76.aspx

It something to think about.

from the above cited study: Diagnostic Error in Acute Care

"Commonly misdiagnosed conditions include cancer, infection, fractures, myocardial infarction, embolism, neurological conditions, and aneurysms."

Hi, invisable -

As one of the "rares" but definitely no expert, it had to be tough to hear what that doc said.

Have to also admit confusion, but after almost a year from the onset, have to now believe that mine is caused by primary Sjogren's Syndrome that some of my docs have Dx'd and which isn't curable - so can't imagine that the neuropathy will ever leave. I just continue with the supplements and no Rx meds.

The burning has gotten much better (except face but not continuously) and no signs of length-dependent. Did have mild balance issues early on but not anymore, and only get a little dizzy once in awhile if I move or turn too fast. Muscle strength and gait remain very good.

Sorry I can't be of any help but will definitely ask the neuro I'm seeing on the
21st whether or not NLD SFN causes cell death.

--known as NEURONOPATHY, which is associated with Sjogren's an someother autoimmune situations, in which the primary atttack is on the dorsal root ganglia and the cell bodies there, rather than on the axonal fibers:

http://neuromuscular.wustl.edu/antibody/sneuron.html

In these cases, if the cell bodies are destroyed, they are gone, and that entire nerve is gone, so healingis muchmore difficult than with condtions in which only myelin of the axon is damaged; recovery of function depends on how much other nerve cells nearby that res till functioning can sprout additional connecting axons to take over some of the functions. (Possible, but difficult.)

Bingo, glenntaj! Had actually forgotten all about dorsal root ganglionitis - duh.
Another duh - one of the neuros actually called what I have neuronopathy associated with the Sjogren's (her opinion), so you're right on the money with this.

I was on the net looking for info on neuropathy when I found this site. Maybe someone here has some insights they can share with me.

One year ago I had what my primary doctor said was diabetic neuropathy in my feet. I have mild diabetes. It started with cold toes then advanced to stinging. He sent me to a neurologist for conformation. I had the nerve tests in the office which showed very mild degradation in the feet nerves. Within a month my forearms, face, neck, a hand started stinging. A short time later the shin around my eyes start stinging and the roof of my mouth. Then electric shocks to my tongue. Then it progressed to my trunk and testicles. In several instances the sting was preferred for days with a chill sensation before the stinging started.

My neurologist was stumped because the skin biopsy was normal though he said the skin site chosen could have been poor. He sent me to the Mayo Clinic they diagnosed hypersensitivity of the nerve endings but could not say why. My local neurologist said this was a description of the symptoms not a Dx.

Essentially I have stinging in most, almost my entire body when not on meds. I am almost pain free on the meds which include Lyrica, Cymbalta, and Oxycontin.

By accident I ran across an abstract on non-length dependent PN. It described my symptoms in a general way. I have been unable to find any indepth info on the non-length dependent PN. Then I found this site.

If anyone can point me to info on this decease I would be grateful. Any insights or personal experiences would also be appreciated. Why my neurologist never mentioned this decease is troubling. Thanks for any help.

--even a lot of neurologists, are unfamiliar with neuropathy that presents body-wide, or acutely, or beyond that standard "stocking and glove" distribution.

It is possible you have diabetes/impaired glucose tolerance contributing to your symptoms on some level, but yes, the anatomical distribution does not sound typical of diabetic neuropathy, so there may be another factor at work here--possibly autoimmune, toxic or medication induced (what meds are you currently taking, or taking when this showed up?). Nutritional deficiencies and infectious causes are also possibilities.

Take a look at:

http://neuromuscular.wustl.edu/time/...htm#neuropathy

http://neuromuscular.wustl.edu/nanatomy/proxsens.html

http://neuromuscular.wustl.edu/antib...n.html#sjogren

Thank you for your response. (I just read my original post. I had a bunch of misspellings.)

Before the neuropathy started I was on metformin, januvia, baby aspirin and lisinaphril. My A1c has hovered around 7.0. Mild diabetes and some hypertension. That' all.

My docs have tested for EVERYTHING they could think of. I was tested for heavy metals, toxins, blood disorders of all kinds. I don't drink except on special occasions. The only abnormality they found ( other than diabetes) was low-normal B12. I have been getting B12 injections every two weeks since then and take metanx twice daily.

My neurologist has gotten the pain under control after six months of near debilitating pain. He seems satisfied. I am not. Until I know what the cause is, there is the threat that it is progressive. My sentiment is that you have to know the cause in order to treat the problem. Treating only the pain symptom is not my idea of acceptable treatment. ( maybe I expect too much, given the state of knowledge on neuropathy)

Is there any sites that deal specifically with non length dependent neuropathy? I am looking for something that gives symptoms, progression, etc.

Thanks again