Originally Posted by JoannaP79 (Post 1233396)

Hi en bloc/MAT,

I'm looking at private ophthalmologists near me. They charge a lot and I will have to pay myself. I am down the go's virtually every week so think I will have to chase this on my own.
To save paying a fortune for a consultation and then having to come back k again for a test could you let me know exactly what the terminology is. Am I right in thinking it's a Rose Bengal Eye Test to determine dryness of the eyes? I won't get to speak to them before I book the appointment so want the secretary to convey this so I can have it all done in the one extortionately priced appointment.

Am I right in thinking dry eyes could be caused by loads of things? And this test just shows dryness as opposed to anything more complex such as mechanisms causing dryness?

Originally Posted by JoannaP79 (Post 1235160)

I'm really baffled Joanna. Of course you don't need to do this privately? Any high street Boots or reputable optician can run the slit tear break up test or Rose Bengal. I've never even seen an opthamologist - only opticians. In the U.K opticians are mostly qualified to test for sicca and you see them on the NHS and then they can refer you to opthamology if need be. It never has been for me yet though. Try SpecSavers or Boots. Then you could ask your dentist for a referral to get a lip biopsy - also should be possible on the NHS. Just be cunning, calm and convincing with all the healthcare people you come across. That's all I can advise. If tests are positive then spend your money seeing Dr Elizabeth Price in Swindon privately. If the optician thinks you may have Sjogrens. Mine did but dentist didn't. Neuro symptoms can start long before dry eyes or mouth and most people in this boat are seronegative. Good luck. Mat x

Originally Posted by en bloc (Post 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??