Re: Trying to Figure this all out !!!
Unfortunately it does sound suspiciously as though you have SS. There is no definitive test for it, but there are some good markers. I have never tested positive for any of the "gold standard" blood tests, such as ENA, ANA, Sed Rate, Rh Factor or the SS specific RO antibodies. However, I had a profoundly positive (meaning, it showed really old pathologically infiltrated cells, a few decades from the looks of some of them) lip biopsy and later had other types of atypical blood tests. Often doctors tell patients that nothing has shown up in their blood tests, but that is because the doctors aren't running the correct tests. For instance, if no serum protein electrophoresis had been finally done on me, I doubt to this day even with my lip biopsy results that I would be being treated for SS. Doctors have a nasty habit of repeating the same common blood tests (these are fairly cheap comparatively) and then using this argument to tell their patients that there is either nothing wrong, or it must be benign and self limiting. There are literally hundreds of different types of blood tests alone, so how can a doctor make a claim such as "having run every type of test..."? This type of answer is designed to shut up a patient. It's really annoying, not to mention demoralizing to the patient. Don't let this happen to you, if you are feeling that way. Listen to your body--you know it's telling you something is wrong and it needs to be heard.
My blood work reveals a chronically low CD 3 and CD 4 count. (Has anyone ever run these complement tests on you? If not, then request them.) CRP is C-reactive protein, which is used as an inflammatory marker. I have never tested positive for this test, either. According to my blood test results, I also suffer some liver dysfunction and I also frequently have low neutrophils (white blood cells). I get regular serum protein electrophoresis testing done which can be quite revealing. You might want a lip biopsy. This was my "clinching factor" for my disease, but this is not the case for everyone. I had such profoundly established and extensive ss white cell infiltration that there was no denying from whence it came. However, since only very tiny specimens are taken from just a few oral sources, finding infiltration of these rogue SS cells can be like trying to find a needle in a haystack, which can and frequently does offer false negative results. Still, I think I personally would go for it because if the biopsy results are positive, then you may feel like you are moving in the right direction in obtaining a diagnosis. If the results are negative, it may be worth another try at a biopsy with specimens this time being taken from different sites.
SS can cause all the symptoms you are experiencing, plus many more. May you find the answers you deserve, and soon. Very best wishes to you.
Last edited by Administrator; 07-25-2013 at 12:10 PM.