It can only be a very good sign that you are too busy to see a rheumatologist David! I wouldn't have agreed to the lip biopsy myself without my bloods having radically shifted to clearly point towards autoimmunity. And, at the end of the day, I suppose we only submit ourselves to these kind of invasive procedures if and when our symptoms make us sufficiently desperate for answers. Take care and keep busy. Mat

As far as I understand the sicca symptoms can be caused by damage to the glands that secrete the fluids (tears, salive, sweat..) or to the nerve fibers that innervates these glands and regulate their activity.

The positive lip biopsy shows your salivary glands are affected so I guess it means that at least some of your symptoms are SS related and not SFN.
Although, maybe when the nerves that innervates a gland stop working then eventually it damage the gland itself.

Yes thanks - it's your last sentence that I'm wondering about too since I have no real sighs of severe mouth dryness or dental issues and my ultrasound of parotids showed no swelling. And yet my mouth feels horrible and I have tingle and numbness (and now bad tinnitus) right up cheeks into eyes and ears. The oral consultant and rheumatologist said my lip biopsy result was unusually high - especially for someone with good oral health. I relate so well to MS sufferers more than those with classic sicca.

Hi Mat

Was reading your discussion the other day on possible neurological symptoms connected to Sjogren's. This morning I was preparing some documents to take to my Rheumatologist appt. and came across an old printout from a few years back which discusses this topic so thought you might like the link - if you haven't already come across it.

Neurological Manifestations Of Sjogren's Syndrome by Dr. Steven Mandel, M.D.
Neurological Manifestations Of Sjögren's Syndrome

The article is by Steven Mandel, M.D. Clinical Professor of Neurology, Jefferson Medical College. It is displayed on the Sjogren's World website so thanks to them and the author for sharing. Hope it gives you some usable info.

BTW - my Rheumy is from Scotland and is the most caring, kind, open minded medical professional I've had to date - sorry Mat - Scotland's loss is NZ's (and my) gain. I hope you're able to find another just as good when your current Rheumy retires. Mine can't be the only good one to come out of Scotland - after all Scotland has a strong medical training history. All the best for making progress with managing the sjogren's.

Thanks so much for this link Bluesfan - but being the geek I am I've already read it and saved it myself!

Okay I'm trying hard not to begrudge you your Scottish rheum. Mine has now gone part time and will be off by next month the secretary thinks. He's an old school detective type. Someone I know with RA told me he isn't popular with her RA friends because his bedside manner isn't good but I really liked him and he's been very kind to someone I know. My new GP says that every rheum in the hospital is excellent. It really is quite subjective and particular I suppose - like any relationship. But I do feel quite confident in the rheumatology at my new hospital.

However everyone I've met who knows my neurologist, be it neighbours, colleagues or mutual friends - and several patients - say that she is a highly dedicated, kind and lovely woman. She just wasn't with me! But I'm told by a nurse friend that I'm to give her another chance next week, as she was working on the wrong premise that I only had inactive RA. So I'm trying hard to keep the door open. But invisible armour is all ready too just in case she again tells me I'm making a drama out of very little, just "a bit of permanent numbness", over thinking everything and look too well to have a multisystem disease again!