Originally Posted by en bloc

I think your emphasis to her should be on the increase of symptoms...showing progression of neurologic manifestations of Sjogren's. You report new symptoms fairly often, it seems. They may be minor in her eyes (itching finger tips, etc, but nonetheless, they are very important, and need to be considered when looking at the entire picture of your condition. If she doesn't do this on her own, then you should, by all means, advocate for yourself and point out how each new neurologic symptoms (however small) shows progression...and list them all.

I don't know if you have been keeping record of your symptoms, but if not, you should. Detailing when each new symptom starts might also show a pattern of sorts as well. Your recording should also include any increase in severity of symptoms you already have. Doctors usually give these types of recordings some importance.

I disagree that your lack of findings on MRI and CT leaves you with only glandular Sjogren's. Your obvious neurological symptoms...reported for quite some time now, and over the years with other doctors t previous places you lived, has to be taken into account. This goes right back to the biopsy. Even you stated once (right from an official report or letter) that they referred to it as 'presumed SFN'. What the heck is that?? 'Presumed' is not a word that should be used in this context. If they aren't sure, then they need to redo the test. You need to point out the failings in regards to this test...as this neuro might not even know that only one site on each leg was done (at the wrong location), or that it wasn't handled properly (transport).

She felt last time that your SFN wasn't progressing...well now it is. And to just 'accept' that your resulting numbness is permanent and irreversible is nothing short of sad and scary. Why on earth doesn't she treat aggressively NOW, so the resulting symptoms don't get to that point of no return?? I would ask this question...word for word. Neurological complications of Sjogren's is far different than that of RA...and hopefully she knows this and will change her tune accordingly.

When is this upcoming neuro appt? (I'm sure you've mentioned it, but I keep forgetting).