Quote:
Originally Posted by en bloc
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.
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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