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Senior Member
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Join Date: Feb 2011
Location: Shenandoah Mountains, VA
Posts: 1,250
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Senior Member
Join Date: Feb 2011
Location: Shenandoah Mountains, VA
Posts: 1,250
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It is possible (many are ) to be sero-negative for Sjogren's ...I am. That's why I had the lip biopsy to confirm. What symptoms do you have that are Sjogren's? Have you ever had a schirmer's test and/or lip biopsy to confirm or deny the SjS?
The autonomic neuropathy comes from the ganglionitis as well. I have every aspect of it from severe gastroparesis, balance, temp control, difficulty urinating and many cardiac manifestations. Autonomic also includes (little talked about) vascular spasms...whether they be cardiac/coronary or the medium sized vessels in your skin causing livedo reticularis (which I have head to toe).
I was going to tell you that no "effective" treatment for ganglionitis has been found yet...but was afraid of upsetting you. There are, however, fairly good treatments for (some of) the autonomic dysfunctions. What types of autonomic problems do you have?
Pain is the hardest to cope with...by far. I don't have any suggestions for that as I continue to struggle myself. I try to distract myself as best possible, which is effective for short time periods. I'm still hoping the R lipoic acid holds some promise.
I know it may sound cheesy, but attitude is your best asset...keep it positive and always remember what you still have, not what you've lost.
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