Hi, I’m new to talking about Sjorgrens. My eye Dr. says that I definitely have it, however when my PC Dr sent me for a biopsy it came back negative. Is it possible to have it with a negative test? I have all the symptoms, which my Drs are telling me it’s from other things I do have. Please help me.
Hi tweetygirl and welcome to our merry band (well some of the time anyway!
I'm afraid your experiences are all too common as the level of medical knowledge about Sjogrens is not what I would expect it to be and sadly many medics don't touch the subject other than a quick mention during a lecture at med school so disagreements between them over Sjogrens are also common sadly.
my opthalmologist was the one who had I had SS when I had no other symptoms. Now I have many symptoms but still am sero negative to all auto anti bodies found sometimes in Sjogrens and other Auto immune diseases. I also have a negative biopsy and ultra siund scan of my salivary glands.
It has taken me several rheumatologists and heated discussions to get an agreement with my GP opthalmologist and 4th rheumatologist ( I fired the other 3 ) and neurologist that I have SS and there is unlikely to be another cause of the symptoms.
So yes it is possible to answer your question. Some have found the SJO test from IMMCO diagnostics available via some opthalmologists in The USA nore accurate - But I have had it and it was negative ther is a 10-15% error in it.
It is very stressful to feel so unwell and not be believed or be told it's something else - many of us have suffered the same experiences so please use the experirnces of members to help especially with regards to good medic in your area. I can't help there as I am in the UK but others will chime in.
The main thing is to get a medic who you trust and who understands SS they need not be rheumatologists.
Then try not to get to stressed as stress does make all AI worse .
I hope this helps for now - look around the site and read discussions you will find many references to similar experiences as yours so you aren't alone.
Hope to see your posts as you get used to the group. :)
I’ve had some blood tests done. I’m positive for ANA and RH.
BTW: SICCA stands for Sjogren's International Collaborative Clinical Alliance based in San Francisco which convened several years ago and has reconvened this year
You got to hold on.