I'm not sure what to tell you. But a push toward more answers would be appropriate, I think. You may/may not benefit from it in terms of treatment. But then again, you may find an autoimmune disease presence and that the pain is actually SFN (based upon a positive skin biopsy) where IVIG might be an option for treatment. It has been know to be quite effective for AI based SFN. Then it would have been worth the effort to test.

I have never heard of ganglionitis being diagnosed from an exam. I'd be interested in knowing what part of an exam he's basing that on. If he specializes in ganglionitis patients, I wonder if he's written any articles. I'd love to read any new ideas in regards to this. As far as I was told, the ganglia is not repairable, so the focus is on slowing progression, not healing the already damaged ganglia. That's why finding the source is important...so treatment can be focused there.

Maybe he's talking about a different ganglia all together. Mine is the dorsal root ganglia (in the lumbar spine) and autonomic ganglia. My symptoms are of course pain...mostly in lower back running through the butt into the backs of my legs. Now I have allodynia in both legs. The worst however, is the pain in the bottom of my feet. The autonomic ganglia control all autonomic dysfunction. My symptoms include severe heart rate/rhythm problems (requiring a pacemaker), gastroparesis, lack of temperature regulation, neurally mediate hypotension, balance, cognitive problems, etc. etc.

My treatments include Plaquenil for the Sjogren's to help slow progression and a wide array of meds for all the autonomic dysfunction. I also take several supplements that I learned about here. I have not had luck with any treatment for pain, and only take very small doses to percocet to take the edge off. Pain is just a part of my life at this point and I imagine it will be. I am however trying lidoderm patches this week.

I hope you pursue and find some answers that open doors for treatment. I know it's hard but try to stay optimistic. Hold your head high and focus on what you still have, not what you've lost. Take it one minute at a time if you have to.

I'd be interested in hearing follow-up from you about future testing and possible causes of the bigger picture for you. I'll keep you in my thoughts.

Thank you en bloc

I will take the questions you asked with me to my appointment on wednesday, I believe you made some good points. I won't be seeing my neuro at that time but maybe I can get a message through to him. I will definately be following up with him in a few weeks after the ketamine is done. Thank you for your feedback and advice, I will be pushing a little further to get more results. Especially the skin biopsy.

As for the diagnosis of ganglioneuritis from an exam? Now I am really curious. How is it diagnosed with everyone else here? I know you have had the MRI to confirm - but you had the diagnosis before you had the MRI didn't you? I don't know if he has any papers on it, i'll have to ask him when I see him.

Mine is thought to be at the dorsal root ganglia cervical 8/thoracic 1 region. My pain is in my arms. Severe pain in my arms. I also have allodynia in my arms - but it is under control most of the time now with this alzheimer's medication! I am sorry you have the pain, but am glad you can control with just a limited amount of pain meds. Thank you again for your support and education, I will check back in on Thursday after my dr. app.

I really, really, appreciate your taking the time to talk with me. I just need someone to be a sounding board just like this now and then - it really helps!

I hope you can get some better resolution on Thursday. I will be thinking of you. Have hope that something can be done to make this a more tolerable situation for you. I know you are at wits end. Please tell your doctor that. Don't be afraid to really let him know all that you are going through. You are always in my prayers. Don't give up. I do care about you and want you to have a better quality of life. fight for it! ginnie