Blaine,

I'm curious about your condition and wonder if you'd share HOW you were diagnosed with this? What tests and what findings lead them to ganglioneuritis?

I ask because I have been diagnosed with ganglionitis secondary to Sjogren's syndrome (an autoimmune disease in which the exocrine system is affected). There seems to be a direct relation to Sjogren's and ganglionitis...but very little is written about it, since viewing the ganglion with any detail is very new, to my understanding.

My Sjogren's was diagnosed via lip biopsy & schirmer's test...and of course clinical symptoms.

I have suffered from severe autonomic neuropathy as well as PN (which is mostly pain in the back, neck, and feet). My doctor always thought there was some sort of ganglionopathy causing balance, autonomic, and pain issues but had a hard time finding the source. I recently had an MRI done to specifically look at the dorsal root ganglion (called DRG protocol). They found it to be enlarged bilaterally with increased signal...consistent with ganglionitis (which completely explains both autonomic and peripheral neuropathy)

I assume ganglioneuritis is the same (or similar) to ganglionitis (inflammation of the dorsal root ganglion (DRG). I have tried multiple meds for the pain without any luck. I am currently trying R-lipoic acid after reading MrsD posts. I'm just under one week into it (now at 100mg daily). No relief just yet, but I'm still hopeful.

The most useful suggestion I can think of, is treatment of the underlining autoimmune disorder (if that's what he thinks is causing it). Many AI diseases are initiated by infection (viral or bacterial), stress, trauma, etc. I would think you should be evaluated by a rheumatologist for AI disease. By the way, unless you have had a tick bite with a bulls-eye rash your lyme titer could have been affected by an autoimmune process. It is common for those with AI disease to test positive for Lyme (according to my neuro)....and not actually have it.

I wish I had more to offer you. However, there is more effective AI treatments these days that may be helpful to you if they identify the underlining problem. I would also read mrsD's posts on R-lipoic acid. It certainly can't hurt to try.