What are the symptoms of and tests for 'Sjogren's Syndorme'?

[GrittyReads]

I realise that this site is not necessarily about all things to do with the eyes, but can anyone advise me about the symptoms of Sjogren's Syndrome, and what tests need to be done for it to be diagnosed. Or suggest a site where I can find out more.

I am having problems with slightly dry eyes, and I have also noticed a strange dryness in my mouth on waking ... except it just 'feels' dry to me ... while it is actually moist and saliva producing.

I am at risk of an autoimmune liver condition called PBC, and a lot of people with this develop Sjogren's, but I don't have PBC - although I have blood tests every year to keep an eye on it. I want to be able to ask my Dr for the tests for Sjogren's to be included the next time I have my annual blood tests.

However, I want to avoid my expensive optician muscling in on this: I am tired of having to avoid their offers of treatment that could be/ should be done on the NHS. When I developed an epi-retinal membrane - about 10 years ago - they were the only local opticians who had the necessary scanners etc. In retrospect, I should have seen a Dr - a friend was recently directed to the NHS, for a similar condition, by her very understanding optician.

All advice gratefully received.

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Hi, Google the Macular Society website, they have info on lots of conditions and a helpline.

[Rosalyn-helpline Partner]

Dear GrittyReads,

I am afraid that we do not directly deal with Sjogrens syndrome, as it is not a macular related symptom, though I am aware that one of the symptoms is dry eyes.

In terms of obtaining a diagnosis, this is generally via the GP, who will refer you for testing as needed. I am copying a link for a society that deals specifically with Sjogrens and has a helpline;

bssa.uk.net/contact.asp

Kind regards,

Macular Society helpline

0300 3030 111

[GrittyReads in reply to Rosalyn-helpline]

Thank you so much,

Gritty

[Hastingsgal]

Now Sjogrens I know a lot about because this is what they thought I had so I’ve had all the tests. They still think I must have it but my ANA marker is negative & first lip biopsy negative (this can happen in positive people. I’m having another lip biopsy tomorrow in fact to look at my moisture glands. The symptoms of Sjogrens are very similar to some PBC. You need to be referred to an ophthalmologist. What country are you in? I’m happy to expand on this if you still need info. It’s useful getting a definite from Opthalmics on DED and what’s causing it. Meibomium gland dysfunction is causing mine & severe inflammation which they don’t know how to control w me. They’ve tried everything. There’s not much they can do if diagnosed w S’s. They just treat the symptoms. For instance my eyes were stage 4 dry. That’s the highest. They inserted plugs into my tear ducts which stay permanently. They help to keep the tears in the eyes to help moisturise. But they only do this in very dry eye. I also have the dry mouth. Drink tons of water. Chewing gum helps stimulate the saliva. Lemons help stimulate saliva production. Kind regards, Amy