[QUOTE=en bloc;1233178]Let me just add:

I was so happy when you were approved for your trial of Cellcept. I still have hope that you will experience greater improvement with it...as you are still early in the trial and it takes time for the immune system to respond to this type of change and for the inflammation to follow suit.

But I also know we have had many discussions about IVIG...and this is where my hope for you grows deep and where my passion about lack of information (doctors across the globe) fires me up. I know what IVIG has done for me and I know what IVIG has done for many (that I have spoken to) with autoimmune based neuropathy/SFN...and I want that opportunity for you. It may not help, but you should at least be given the opportunity...and it doesn't sound like you will. Hearing you say that your nerves are dead and that you will just have to live with some aspects of the neuropathy isn't fair, and isn't right...not when there is appropriate treatment out there that is widely being used (with success).

I hopes this helps clarify where I was coming from with my last post. You have fought so hard just to get where you are at. I only wish you could fight the system in getting you the BEST treatment out there for neuro/SFN manifestations of Sjogren's...something that can actually improve the condition and density of nerve fibers.

You have MORE knowledge than most of your doctors...just from research. Why can't they do the same??[/QUOTE

Hi Matt, thank you for info ref eye test and lip biopsy. I'm going to look into optometrists and see if any may be able to do this privately. I didn't think a dentist would do this here in the UK. I will investigate. I'd be worried they wouldn't know what to do with the sample/where it would be analysed.
My ear is usually normal, only slightly raised crp even when the immune activity is rampant.
En Bloc, I believe it is to a great extent down to funding that access to treatment options are limited here. The NHS is increasingly underfunded.