Quote:
Originally Posted by adelina
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.