I am so angry today. I have been so much in pain the past couple of weeks I can't even visit these pages. Today is a little better. It is the time of year when I first "got" this condition - Ganglioneuritis. Today the sun is shining and i want to go garden. Instead I am sitting crying and raging. I am in so much pain this time of year because one of my "inflamers" is allergys so the end of february starts my misery time. And I don't even have ANY symptoms right now! But I am exhausted and my arms feel the worst they can feel. The med s Itake make me so dull-witted I can't read a book and we don't have tv so all I can think about is how much I wantto so something - ANYTHING! I am so angry about my condition. I thought I was getting on towards accepting it - but today i feel like I am back at ground zero.

I go in on Wednesday day to start a series of three weekly Ketamine SHOTS. That will help temporarily. But could someone please help me force my dr.s to figure how to make this go away. I can't do this... I feel like I am loosing my mind. I need to go in there non-emotional and educated on the right test. In the past, things have show that I test a little high for some allergy and rheumatology test but I am not sure which ones. When I saw the specialists in those departments they where not concerned. BUT - of course by the time I saw them it was the time of year that my pain level was lower either later summer or autumn.

What can I do now to force the issue to get things addressed now. And have the correct tests done now. What tests do I have done? I know I have had tests before - but at the wrong time of year I think - does it make a difference?

ok i jus went an transplanted some strawberrries from a pot that broke two years ago - it took maybe 15 mins and now my arms part munb, tinlgins. pinsadn needls, tremblings, throbbling, heavy lke cement AND I WANT TO KICK IN MY GLASS DOOR...!!!!!!!!!!!!!1

Am i normal??/ why do i feel like i am such a foool ? i cna't live like this. I can;t sit on the couch WHILE EVERYBODY ELSE IN MY FAMILY GOES AND DOES STUFF!!! how do i ge tthrough this???????????

I am not suffering nearly enough to offer you the empathy that you need, but I am sorry for what you are going through. My condition has been worse at times in the past, some days are better than others, but it is an untreatable, degenerative neuropathy, so I do look forward to increasing disability. Right now I can deal with where I am, and hopefully that will continue to be true, wherever that ends up.
Are you and your doctors adequately addressing pain relief? It makes the biggest difference in my quality of life, completely transforming both how much I am able to do and how I feel about myself and my world. I hope that you get a definitive and treatable diagnosis soon, but in the meantime insist that you get some pain medication for breakthrough pain so that you are able to do even a few of the things that bring you joy, without having to regret it.
Hopefully others will have more constructive help to offer. You are certainly facing daunting challenges. How is your support system?

Thank you Susanne. I am seeing my pain management dr. this Wednesday and hope to address these pain issues. I need to have a more functional life - obviously.

I am going to insist on some alternative pain meds if I could get some alternatives to percocet and oxycontin I would really appreciate feedback on other types and how they affect people.

I don't have a support system at all. Unfortunately I have isolated myself accidentally and don’t feel comfortable talking to people about my condition with the exception being here.

Hi Aldelina, I am so sorry that you are in such pain. I know that you have not been posting and I was worried about you.
Please keep that journal for your doctor. You do need to get some more help. Nobody should be reduced to crying on the couch all day. I sure would tell the doctor in a no no sense way about what you are experinencing. If you cry in front of him so be it. Your needs must be brought to his attention one way or the other. Your quaility of life is on the line, and you must fight to get the relief you need. I wish there was something I could do for you. Can you call and ask to be seen quickly? I am thinking of you Aldelina, and wish there was an immediate kind of help for you. Call the Doctor, fight to get more help. ginnie

Hi Adelina,

Sorry to hear you're feeling so bad.

I wanted to ask you a few questions to better understand what you're going through. There are very few with a diagnosis of ganglioneuropathy/ganglionitis currently active on this board. Mine came from a sjogren's diagnosis (confirmed by lip biopsy) and then a new protocol with MRI to look at the dorsal root ganglion confirming the bilaterally enlarged DRG. The Sjogren's is known to cause ganglioneuropathy.

My question is how you got your diagnosis. What tests where used? And is your ganglionitis associated with an autoimmune disease? If so, which one? I have never heard of allergies being tied to ganglionitis before, but I'm curious about this connection. I know allergies are common with autoimmune disease (because there are immune based), but I don't understand how an allergy affects the ganglia directly. Can you explain this to me?

Lastly, can you use something to control the allergies if this is what setting off your pain? Addressing the 'root' of the problem (allergies for you) then maybe it would reduce your pain.

Hoping you feel better.

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

Hi ginnie, I will be talking to my dr on Wednesday. I hope he will find something different to give me. The ketemine will help for a little while. I do keep a daily log of how I feel, thanks for your concern ginnie. Hopefully I will have good news Thursday morning.

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