I pulled the following quote out of a 2010 article by Kenneth C. Gorson from Tufts University. His earlier work (2008) describing the NLD SFN/G (yes the G is for Ganglionopathy, and the N is for Neuronopathy rather than Neuropathy which is used in typically used to describe LD SFN) was the first article which explained adequately the symptoms that I had/am experiencing. (Sorry, I’m pretty sure that last sentence was too long and hard to read.)

Here the reference to the 2008 study (I think you might be able to get it off the internet if you are interested):

Gorson KC, Herrmann DN, Thiagarajan R, et al. Non-length dependent small fibre neuropathy/ ganglionopathy. J Neurol Neurosurg Psychiatry 2008;79: Pages 163-9.

And finally the 2010 quote:

“A distinctive clinical pattern of burning neuropathic pain and small fibre sensory loss involving proximal regions of the limbs, trunk and face has been characterized clinically and by the spatial distribution of skin biopsy abnormalities as a non-length-dependent small fibre neuropathy / ganglionopathy.

“The cause of this curious disorder remains unknown in the majority of patients, but investigators have postulated that the pathology may be localized to the dorsal root ganglia subserving small nerve fibers. The condition has been associated with diabetes mellitus, Sjögren syndrome, celiac disease and other inflammatory or autoimmune diseases in some cases.” [Note: some other association has been with rheumatoid arthritis, hepatitis C virus, Lymes disease, Crohn’s disease, and cancers/chemotherapy but many cases are “ideopathic”]

“This disorder, which is rare but probably under recognized, can be distinguished from the all too- frequent length-dependent, distal small fibre neuropathy (SFN) by the topographical distribution of abnormalities on skin biopsy; an abnormal intraepidermal nerve fibre density (IEND) of proximal and distal regions, or a disproportionately reduced IEND at proximal sites, suggests a non-length-dependent process.”

Yes I have non-length dependent small fiber neuronopathy / ganglionopathy. Mine is likely from the association with Type II diabetes but who knows?? You have to be willing to to have a high tolerance for dealing with ambiguity, chaos and conflicting opinions when having this problem, working with MDs, trying to figure out which way is best path forward, etc. I’m not sure if you will have a similar insight at some point in your struggle, but a year or two ago, I realized that I had more knowledge of this than the MDs I was seeing. Right now I would be happy finding an MD who would be willing to make an honest effort just to learn about it. Sounds like you Docs are better.

I have a burning face pain and so I pay attention to information on trigeminal neuralgia, etc. FYI, and based on nothing specific, my brain seems to recall at this time that some people have head pain a) in the forehead, around the eyes, nose, and cheek area, b) in the scalp and “hair” area; and c) inside the mouth and on the tongue. I am sure I have read about other areas (neck, shoulders) involved as well.

One time my wife stopped me from going out the door to get an extreme haircut. I came to the conclusion that a haircut would stop my head from hurting. I guess now it sounds pretty stupid but at the time it "sounded like a plan!"

The thing with face pain is that you become a walking set-up man for every wanna-be comedian in town:
Them, "How are you today Mike?"
Me, "My face hurts."
Them, "Yeah, (insert your joke here)".

Moving on, here is to the start of a great week!!