I have my first ever appointment with a rheumatologist on Monday.
Background info: completely healthy until October last year when partoid glands swelled up causing terrible pain. Took two months to go down without any treatment (some hard lumps underneath jaw left and slightly puffy face) ... had lots aches and pains and they have gradually subsided to occasional, had dry eyes and mouth and nose and they have improved but not completely gone away, seem to always be hot, digestive system seems to have gone haywire...
I am self medicating with eye drops, biotene toothpaste/mouthwash/gel. I am eating Activia yoghurt and started taken omega 3 to help the stomach, drinking fibre drinks too. Trying to eat healtily but dont really have any appetite since this started. Lost half a stone so far.
Questions to ask the rheumatologist? I dont know if I have SS yet, but assume I have if they are sending me to see him? Are there any questions that I should ask on a first time visit and also, what should I expect from this appointment? Will I be asked lots of questions?
Many thanks.
Hi Fluffie :)
Rheumatologist deal with a spectrum of autoimmune conditions and there are other diseases which can cause simllar symptoms to SjS. At a first consultation you're likely to be asked quite a lot because they'll want your medical history and also the symptoms you're suffering from. They will probably want to take bloods.
I would note all your symptoms down before you go. It's so easy to miss something out once you're actually in the doc's office. I'd also make a note of the medications you've been taking.
The other thing I'd to is to make a list of questions that you have for the doctor. Most docs don't like it if you've dxd yourself before you've seen them so some questions need to be 'framed' carefully. Of course if the rheumy says, after examination, "well I think you have Sjogren's" then you can ask the questions any way you want!
Good luck. Let us know how it goes. Take care - Scottie :)
Saw the rheumatologist for the first time today. He says the RF factor was negative and so was the SSA results. Did a test to measure my eyes and one eye was 5 and the other 12 (forgot to say I was taking omega 3 - will that make much difference on a test?).
He says I may have or may not have SS and has asked for more blood tests (not sure what else they can test).
He mentioned lip biopsy but I told him I am not having my mouth butchered - have to go to hospital again this afternoon and I think it is for that so will tell them not to bother.
Urine was fine so kidneys ok I assume?
I dont think I mentioned everything.... and he said to just sip water for dry mouth....
Any thoughts?
Hi Fluffie :)
According to my rheumatologist any reading for eyes under 10 - is dry. So one eye is dry and at just 2 over the 10 - the other eye isn't as wet as it could be.
It's good that he's asked for more blood tests because he is obviously trying to get to the bottom of what is going on and he hasn't ruled SjS out.
I was prescribed lozenges to suck, that stimulate saliva but I must admit, sipping water and just holding it in my mouth for a while is about as effective.
When he's done more tests maybe he may try you on Plaquenil to see iif it improves any symptoms or not. Some things are unfortunately trial and error.
I'm glad your kidneys are good.
take care - Scottie :)