Originally Posted by en bloc

The letter helps a bit, but he's not very specific about what he's referring to in regards to the neurological manifestations...as he mentioned SFN, disequilibrium, and the SVID/SVD. He doesn't mentioned CNS...and there is a difference between neuro manifestations and CNS (because SFN is a peripheral development, not CNS).

He only brings up the SVID as it does appear in those with Sjogren's...which it does. He doesn't refer to this as the main neuro symptom. He states the SFN and disequilibrium as main symptoms/problems. Therefore, I think he's addressing the immunosuppression as being related to helping these...as he would consider this treatment if both Sjogren's & neuro manifestations are confirmed (which are his two questions).

I DO think there is possibly something neuro related with the disequilibrium/vertigo. I agree that autonomic testing would be a good idea as maybe this disequilibrium/vertigo is a vagus nerve problem. Have you read anything about the vagus nerve? It can cause a variety of problems, including unusual dizziness.

I think my best summary of his letter is that he feels immunosuppression is best course IF there is confirmation (from other doctors) of both Sjogren's and neuro manifestation of Sjogren's (which he is referring to SFN and the disequilibrium/vertigo). This would be a normal course of action to treat SFN resulting from Sjogren's. I don't think they know what is causing the disequilibrium, but they likely think it's Sjogren's or neuro related. Keep in mind that autonomic dysfunction (which may be causing the vertigo) IS related to SFN...and is peripheral not CNS.

There is no indication he is considering a CNS involvement...thankfully!! That should ease your mind, for sure.

I also agree that Cellcept would be a good option to try once all your testing is done (don't want to medicate before you complete testing).