Yes I disappeared for a bit after my POTS diagnosis. Sorry about that. Struggled with diagnosis implications etc and medication. Anyway here I am after finally attending first Rheumy appt.
The consultant was extremely fast and didn't ask many any of questions I thought he might but nevertheless he seemed to have a plan. Skin biopsy for my rash probably. Maybe a saliva gland biopsy. And the dry eye schimers test & I think the nurse took about 10 tubes of blood. I got the dry eye test straight away and my question is about that...
At the end of the test the nurse said my results were 4 & 4.5 - now this has confused me... The strips are up to 3.5 cm but are generally read in mm. So a reading of 4cm couldn't have happened or could it? So did I read at 4mm & 4.5mm ? If I did I'm assuming that's very dry! But if 4cm then obviously not!!
So if anyone has don't the eye test - can you let me know what you think?! My eyes were really dry and sore/itchy at the end of it...
Much appreciated if anyone can share their thoughts on this. Thank you.
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trueman
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Hey, nay problem, we all fade in and out. Nice to have you back. We all need time to process procedures, info, revelations and implications and we have soo many!😬
Sounds like your rheumy was thorough, congrats, though quick, sign of the time, but I hope you got all your questions answered - very important.
Thanks for your update.
I pass you on to those who know about your test results. I never know if I'm in inches, cm, gallons or mimimols!!! but then numbers are a complete mystery to me to start with!
I had the Schirmer test done back in 2014. I'm afraid I can't really say what the results mean as I don't know if it is measured in mm or cm. When I had mine done I was told that the strips were bone dry. That there was no moisture from my eyes at all. Nurse who did the test said she hadn't seen that before. Yes she had seen tests were there was very little moisture but not none at all. I did find this link which may help you understand your results a bit better 218.248.31.202/newsletterpr...
I had this test a couple of months ago and my result was given in mm. if your eyes felt dry at the time then 4mm is certainly feasible. I didn't realise I had dry eyes until the rheumy at my initial consultation shoved a strip of paper in my eye and told me that my tear production was poor!
Hi Trueman. I have Sjogren's and my eyes are dry but I didn't fail the Schirmer's test a year ago. Two opticians and many others have explained to me that the Schirmer's is really not that reliable because most people will produce something if a piece of sharp blotting paper is placed in the eye. Apparently the Rose Bengal test is far more reliable and the main method used by opticians and eye hospitals nowadays. The main reason rheumatologists don't use it is because it requires special equipment and an anaesthetic eye drop to be administered which has to be signed for by the patient.
I found Schirmers really painful and I had already experienced two Rose Bengal tests which had shown poor tear break up and pathologically dry eyes a few years ago. I also found Amitriptyline caused my eyes to become terribly dry when I took it for nerve pain for three years. I wouldn't have the Schirmers test again now as I have confirmed Sjogren's anyway - it was just too sore.
Also I've learned that small fibre sensory neuropathy (Sjogrens, MS and other chronic diseases) can cause this as well as primary and secondary PoTS. These neuro symptoms can cause the eyes to dry up as well - more mildly than conventional Sicca I believe. I think mine relates to my small fibre neuropathy which I believe is part of my neuro presentation of Sjogrens. The other sort is often a secondary Sjogrens - more closely associated with RA and Lupus although I'm sure many with primary Sjogren's have severe sicca too.
Ps my Sjogrens has finally been confirmed by a lip biopsy - apparently the most definitive way to diagnose primary Sjogrens Disease.
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Sudden vision loss in right eye:(
Do you think it is Lupus related & do you think my DLE is progressing to SLE? 
Now I am cross! Why don't doctors communicate with patients??!
well that was a waste of bleeping time !!!
Diagnosis dilemma what's in a name? 
