Member
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Join Date: Mar 2011
Location: California
Posts: 170
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Member
Join Date: Mar 2011
Location: California
Posts: 170
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My Neuro diagnosed me based on his findings mostly from a physical exam and history I think. I need to get a copy of all my records I think. My symptoms are EXACTLY like Sjogrens ganlioneuritis/ganglionitis and Chagas, and I too have been through too many medications to count and at this time amd on about 9.
My Neuro talks alot comparing me to Sjogrens patients. I do not have Sjogrens and the thought is that mine must be an inherited disorder. Dr. G (Neuro) did a series of physical tests that included pressing my cuticles on my fingers - I had little sensation, a scratch test that showed only some red on the skin of my arm, an eye test that showed one of my eyes redialating in the pin light and more that I can not remember.
He determined that I developed this ganglioneuritis from the intial virus 2 yrs ago, now it has turned into an autonomic neuropathy. As you said it is hard to find information on this condition, as is viewing the dorsal root ganglion.
I have just a week ago had another MRI to update my status, I hope to find some new information from this and maybe some new therapies. Dr. G said that there is no real treatment for ganglionueritis, just to treat the symtoms, there medications I am on allmost cause more harm than good. Okay my arms are giving out on me for the day, I love that I am actually getting a response from someone - thank you, please continue to talk with me. I am better in the AM, I live on the west coast USA! talk in moning
I did try R-lipoic acid for 30 days and did not find a difference. I do not remember the dosage though, I will have to look it up.
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