Hello en bloc

Three years ago, within a 3 week period of time I came down with a respiratory virus, GI virus and the onset of my spring allergies. This so overwhelmed my Autoimmune system that I somehow developed this ganglioneuritis. You and I have spoke before briefly when I first came to this site (I now have a nom de plume like everyone else ).

My neurologist diagnosed my ganglioneuritis by physical exam. He said that it is difficult to pin down exactly what virus caused the ganglioneuritis, and that it is more due to the fact that my body was so overwhelmed by so many inflamations at the same time, but that there is nothing to do for it anyways. He decided to simply treat for the symptoms I had. At that point I really didn't know what to do. I had no other doctor that had found any diagnosis at all, so at least I had someone who had found something wrong after a year of pain.

Currently, any virus, illness, or allergy reaction I have keeps the inflammation going so that my ganglioneuritis does not go away like it does in most people.

We do treat for my allergies, but it makes no difference -
I actually have NO allergy symptoms at all right now. NONE. So I don't know why I am in such pain. I guess I am just assuming to much in saying that it is allergies that is effecting my pain levels, but I don't know what else it could be. I plan on going over this with my pain dr. on Wednesday.

Questions for you (if that is okay)- Do you still have Ganglioneuritis/pathy? Is it still a problem for you? What did having the MRI done do for you? Did they come up with new treatments for you?


Thanks for your response

I thought we had discussed your diagnosis at one point but couldn't remember details. You'll have to pardon me. My memory (and other cognitive functions) are quite problematic and obviously noticeable now. And with the new double vision, I don't spend much time surfing/searching the forum for previous posts, etc.

I wonder if you should dig deeper for more clear answers to your problems. Your presentation and diagnosis are unusual. I'm sure you told me, but again I don't remember, what autoimmune disease do you have that was overwhelmed? Those with AI disease are commonly set into motion by viruses, infections, allergies, even trauma. You might really benefit by knowing more about your condition and what is the root cause. Then you'll be able to better treat the root of the problem...thus helping with the resulting pain you have now. Do you have access to a teaching hospital? Have you had an MRI to rule out any mechanical problems? The lizajane sheets (http://www.lizajane.org) are very helpful to chart testing. Have you had much testing...like skin biopsy, labs for inflammation markers and AI disease, etc? Gosh, I wish someone could help you!!

To answer your question. Yes, I still have ganglioneuropathy. It is not something that will go away (nor have I ever heard of it doing so). There is also no known 'effective' treatment for it.

The MRI just provided the confirmation of the diagnosis. We knew I had some sort of PN from the Sjogren's. Just didn't know the extent until the MRI was done.

I'm so sorry you're suffering with this. I hope someone can help you learn more about the cause so you can have better treatment options. Hope you feel better.

Thanks en bloc

I don't have a previously know AI condition - My dr leans towards some hereditary autoimmune neuropathy, but cannot be sure as I do not know my paternal biological background. He really has not been as pushy as I would like towards finding a source. I agree with you and would like to push further - but in reality what could it do for me? I already have ganglioneuritis and am not likely to recover, is there anything to be done different? According to him no. What do your dr.'s say?

Yes my Neuro dr. is at a teaching hospital and any other dr there that I have seen has been very, very respectful towards him and indicates that he holds a very high position in the hospital. My neuro himself has told me he specializes in the ganglioneuritis cases and has a number of them. In regards to the statement that it goes away; he said that most people never even realize what they have because it is there and gone in 6 months. Whereas with the cases like you and I, if you have as long as this, it is here to stay and there is nothing you can do about it. I just have a hard time accepting this. It has ruined my life, marriage, career potential, my future, my children’s lives, at times I just don't even know why i am alive. I cannot function any more than a verbal feedback unit. Which is important, I do understand - but I even feel guilty touching my kids as my hands are always ice cold and they always shiver when I touch them and I feel so creepy then. I know I have to stop the self pity - but it doesn't feel like self pity - it just feels like reality.

I have had so many tests done; multiple mri’s, one spinal, many, many blood tests. I would like to get a skin biopsy - but why? It would just be proof, not really a solution or a corrective agent. My mri’s were clear, as was the spinal. The blood work always show elevated inflammation but nothing indicating specific marker’s that the rheumatologist or allergy dr’s want to work with. But all of those visits were before I met up with this site. I am going to ask for those records and see what the levels were and what was tested for specifically. Then maybe I can understand and get somewhere with the neuro - I don’t know. I also feel like they test me at the wrong times. They test me for allergies when I don’t have any allergy symptoms. I have had a nerve conduction study done twice - which showed nothing. But I knew that going in. My nuero said my neuropathy won’t show up on a nerve conduction study. It still rankled like heck when the “pompous - ask” of a nerve conduction dr kept “nope - nothing wrong here, no, no neuropathy here, everything fine here, blah, blah, blah”. It most annoying. I am going to use the Liza Jane chart - thank you so very much for that referral!

Where is your ganglio at? (trust me - I can empathize with low cognitive function and memory recall! - I don't remember where yours is placed!) I am curious how yours effects you, what symptoms you have, what treatments you use, ect. thanks

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!