Just come back from seeng new rheumy...

[WildThing]

Hi guys, do you mind if I check in with you and  maybe get some light shed on this situation a bit?  Saw my new rheumy today who seemed far more thorough that the first rubbish one.  He did a paper in the eye type test and said they were negative but I explained that my eyes have been so dry in the past that I haven't been able to keep them open and they became very red.  I also can't cry otherwise it feels like I have sulphuric acid in my eyes and my optitian has seen they are very dry.

He told me that my mouth looked dry and that my salivary test (scan) showed they weren't working.  He also said I hadn't had enough blood test so took some blood but said do far I didn't fill the criteria as I had previously tested positive for antibodies.  He did examine all my glands though just in case of worst case scenario.

He is going to see me in another three months.  It was annoying in a way that my eyes are a bit better today, pitty he couldn't have seen them when they were really bad.  Also the swelling in my ankles has gone down.  It is still there bit not as bad as it was.  he said he couldn't see any welling but I can, they are my ankles and I know and even when he lightly touched them they were very painful.

PS:  it's so funny...'Wild Thing' has just come on the radio

Thanks all x

[soycoffee]

Hi guys, do you mind if I check in with you and  maybe get some light shed on this situation a bit?  Saw my new rheumy today who seemed far more thorough that the first rubbish one.  He did a paper in the eye type test and said they were negative but I explained that my eyes have been so dry in the past that I haven't been able to keep them open and they became very red.  I also can't cry otherwise it feels like I have sulphuric acid in my eyes and my optitian has seen they are very dry.

He told me that my mouth looked dry and that my salivary test (scan) showed they weren't working.  He also said I hadn't had enough blood test so took some blood but said do far I didn't fill the criteria as I had previously tested positive for antibodies.  He did examine all my glands though just in case of worst case scenario.

He is going to see me in another three months.  It was annoying in a way that my eyes are a bit better today, pitty he couldn't have seen them when they were really bad.  Also the swelling in my ankles has gone down.  It is still there bit not as bad as it was.  he said he couldn't see any welling but I can, they are my ankles and I know and even when he lightly touched them they were very painful.

PS:  it's so funny...'Wild Thing' has just come on the radio

Thanks all x

It sounds like the usual first rheumy appointment! You tell him about symptoms he doesn't notice, and *he* notices symptoms you didn't think were important.

You do have dry mouth, and salivary glands that are not working.

?? "[He] said so far I didn't fill the criteria as I had previously tested positive for antibodies." If you test positive for antibodies -- assuming ANA, SS-A (Ro), and SS-B (La) are in the group --then you *do* have a presumption of Sjögren's. If you are seronegative (or seronormal as some of us say) then you do NOT have antibody evidence of Sjögren's. That is a better fit with the sense of your report, that neither ANA nor SS-A nor SS-B were high enough to indicated that you have Sjögren's.

If you liked him, if he wants you to come back, if he is willing to take more blood and look at more blood tests, those are signs of a pretty good start, as rheumatologists go. But the first visit is almost always a let down. Actually that's a *good* sign. If you are scared by things you didn't expect at the first visit, you certainly feel that the rheumatologist is taking you seriously, but not quite in the way you expected.

Have you ever seen a polaroid picture pulled out of the camera, and waited for it to develop? Even if for you things have rapidly gotten worse over the last three months, and it's hard to think you are supposed to wait, because something else might happen, he's there. If it does, call him. You may expect to hear from him with the blood results, and if not, also call, after Boxing Day.

I'm trying to take my own (probably good) advice, and do something else for ten days.

All the best,
Soycoffee

[WildThing]

Hi Soy:  sorry I meant to say that he said you need to fill 4 out of the 6 criteria in order to be given a diagnosis and that I had previously tested negative for antibodies.  I expressed my concern at his reluctance to give me a diagnosis as I have all the symptoms associated with SS and that I knew that up to 40% of SS patients test negative for antibodies but he just said we'll wait until the test results come back. 

I didn't actually see the conultant I was supposed to see I saw his registrar.  This seems to be common practice now on the NHS.  I was referred to a dermatologist by my GP in the summer and ended up not seeing her but one of the nurses instead.  I very rarely see my consultants these days.  I don't know if anyone else is experiencing this in the UK?

[Scottietottie]

Hi Wildthing 

Yes - it's very common to see a registrar rather than the consultant on the letterhead. There are a couple of consultants I see yearly but otherwise it is usually somebody else. Sometimes they will go and confer with the consultant if there are questions. I was referred to a dermatologist urgently after a reaction to antibiotics. I was seen by the registrar but she went and got the consultant on that occasion. I think it probably varies from hospital to hospital. Although its the NHS not everywhere gets the same service.

Take care - Scottie 

[Pisces24]

Durn I don't know why but when I see any of my -ologists, I don't seem to have symptoms. Before and after yeah. I was sooo happy once when my gp said "boy your mouth is dry!".    It is never dry when I see the dentist! 
But I had a "looked like rash" on my feet that an -ologist saw. I never noticed it but he has a lot better light there.

Just tell them you symptoms, etc.  My immunologist wouldn't have thought of Sjogrens testing if I had not told him about my numerous sinus infections, past partroid gland swelling - only a couple times, and numerous teeth cavities. Sometimes a certain symptom will given em that AHA moment and they will think to test for something that is needed.
Good Luck!

[WildThing]

Thanks again guys, I don't know how anyone else is feeling but Ive been sick all over Xmas.  Dog tired, nauseus, stomach cramps and dizzy spells.  What is concerning me now is that nothing is ever showing up in my bloodwork.  What is this thing with only having an official dignosis of SS if you have poitive blood tests?  I don't really understand it