I have not heard of those lesions or plaques being present in Sjogren's, but that doesn't mean it doesn't occur. The scleroses (lesions) are what give MS it's name. That would be an excellent question for your neuro...as to what other things can cause those lesions. The fact that your LP is negative is perplexing.

The autonomic nervous system controls involuntary functions like heart rate, BP, digestion, urination, perspiration, etc. That's why I asked about your heart rate and BP and if you had any problems with it...since you mentioned the urination and balance problems. It seems your BP and heart rate are fine.

The side effect of Plaquenil causing damage to the eyes, is extremely rare, but with your history I understand withholding it.

I'm curious what means of testing did they determine you have Sjogren's? Was your SSA or SSB positive or did you have a lip biopsy? Also, have they done a skin biopsy to check for small fiber neuropathy? What about EMG or nerve conduction studies?

Are they doing anything for your pain...like gabapentin (generic of neurontin), lyrica, or something else? It sounds like you're in considerable pain yet I saw no mention of pain mgmt.

The pain just from touching the skin on your legs is called allodynia. I recently began having a form of this myself that causes pain with a simple brush/touch on my legs.

I know it's a lot of reading, but at the top of this board are many 'stickies' that are very helpful about supplements that can, in some cases, help to relieve pain and other symptoms. There is also a search function on the tool bar that can pull up threads on most anything based upon the word you're looking for...like allodynia, MS, autonomic dysfunction, etc.

If there was one thing I would suggest, it would be ask your doctor about starting two meds at once (cellcept and LDN). If you have negative side-effects, you won't know which is to blame. Same goes for positive effects...won't know which helped. The same goes for even supplements...starting one thing at a time until you know how your body will respond.

what was said about your chiari ? Do you need surgery for it ? sometimes MS is mistaken for the chiari . There is a thread on here for chiari malformation.... One important thing is to get a chiari specialist . Not all NS are chiari specialist. Roz