Today my Rheumatologist called and said my blood work checking for the antibodies that are sometimes found in SJogre's came back negative. She went on to explain that this does not mean that I don't have Sjogren's syndrome, and that the test being positive helps to Confirm the DX.
Now, I am a little confused about this! Does this mean I do or don't have sjogren's? Is there a difference in having Sjogren's and having Sjogren's syndrome, or are they the same thing? Are there more test that I need to have done to rule it in or out? The ANA test that the Hematologist done about one month ago came back negative also.
Does the fact that I have had chronic dry eye for two years mean that I have sjogren's eventhough the blood test was negative, or could this just be dry eye caused by something entirely different. The Rheumatologist made it sound like she still didn't know if I had Sjogren's or not, So why do the test. She said that My opthalmologist would need to dx me with this if I have it. I had already ask him a long time ago to do the test where they put the thin piece of paper inside of the eye lid to check for the amount of tears that are being produced. He said that this test was not reliable because everyone will flood with tears if a piece of this paper is put in thier eye.
Who is suposed to find out if I have this? I thought that if the blood test for the antibodies was negative, then that means I don't have it, but that is not what the Rheumy said! I am really lost on this one!! Any opinions??
This would indeed be confusing. I'll try to sort it out for you.
If the antibody test is positive, then you have Sjogren's Syndrome, I think. You probably also have to have dry eyes and/or mouth. (I don't know for sure)
If the antibody test is Negative, then you might have what is called "Sero-Negative Sjogren's Syndrome. Sero is the medical prefix for "serum" meaning there were no antibodies found in the serum. In Sero-Negative Sjogren's you make the diagnosis by determining that the eyes make insufficient tears, the salivary glands make insufficient saliva (hence Dry eyes and Dry mouth) and then the third part of the diagnosis is made via a biopsy of a salivery gland or the inner surface of the lip. Under the microscope you see that the salivary glands have been invaded by lymphocytes.
I don't understand why he said the eye test was unreliable, but maybe it is. It is probably true that people produce more tears with the paper in place, but they would be accounting for this having done the test on hundreds of thousands of people. Yeah, people produce more, but people with Sjogrens produce less than the norm. People with true dry eye will not "flood the paper." (I wouldn't think)
So, if you prove to have dry eyes and dry mouth (I don't know how they test for that) then the next step would be the biopsy.
I have already been dx with dry eye, Meibimian gland dysfunction( where the Meibomian glands get clogged), and Blepharitis(inflamation (inflammation) on the eye lids). The opthalmologist has had me on over the counter tears for two years for the dry eye and doing the warm soaks and scrubs on the eyelids to help liquify the clogged stuff in the meibomian glands and release it and to keep the eye lid area clean.
The over the counter Refresh tears had preservatives in them and was irritating the conditions, so I was recently changed to the preservative free individual doses. This has helped , but the opthalmologist has added Restasis which I am about to start after I check out potential side effects.
The Rheumatologist said that the blood test checking for these two antibodies could confirm the dx of Sjogren's had they been positive. But the fact that they were negative didn't mean that I did not have Sjogren's!
Everyone seems to be passing me around on this one! I was under the impression that the opthalmologist done the tear test and the Rheumatologist done the lip biopsy! This Rheumatologist is young and looks like she might be fresh out of school and kind of acts lost about all of this!
I do have slightly dry mouth and some changes in my gums lately and have also been choking on dry foods a lot more. I told the Rheumatologist this on the phone and she said that I need to be checked by a dentist regular since dental carries are common in Sjogren's. I could have sworn that she had just said that she didn't know if I had it or not.
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