could i have sjogren's

[mamie]

I have hasimoto's, raynauds, dry mouth,eyes, vagina, fatigue, joint pain, neuropathy and a ana test 1.80 but lip biopsy negative ssa and ssb negative, having plugs put in tear ducts and they will do schirmer test rheumatologist thinks I have it even with negative tests anyone test negative and have it?

[amberjolie1]

Hi Mamie,

I personally had a positive lip biopsy (although ssa and ssb negative), but I know there are a number of people on this forum that seem to be negative with everything but with definite symptoms.  I'm sure one of them will be able to answer you better.  I'm not sure if any of them have been able to obtain an actual diagnosis or not; I believe some have.

[Jellyb]

Mamie,  i have been having sjogrens symptoms for almost 18 years but was just diagnosed in feb. I ha ve been tested for years and My RH factor, ssa, ssb ana,c reactive protien ect ect, have all been within normal range but my raynauds and dryness and joint pain plus a positive schimmer test gave the doctor enough information to finally diagnose me.My eye doctor was the one insisted on sjogrens and pushed me to see the rhumatologist. So yes,  my tests were negative but i think they can vary quite often. You are not the only one:-)

[Joe S.]

Yes you could have Sjogrens. One of my Dr's did not want to accept it until I asked, "Dry eyes, sinuses, mouth, skin, and A$$. What do you think it is?" He mumbled "Sjogren's" and was on board with the Rheumy.

[tedebear710]

Hello, Mamie - there are several people here who don't have positive blood tests or lip biopsy, but they are either diagnosed or treated as having Sjogren's.  My SED & CRP rates have been elevated, ANA and RA positive, but SS-A and SS-B were negative.  My Rheumy doesn't require a lip biopsy.  She says I have SJS.  As long as your Rheumy or other doctors treat your symptoms, that's most important.  I hope you have a compassionate and well informed medical team.
Blessings,
Tede

[CAT1962]

My blood was high for SSB. Rheumy told me not to bother with clinical trials if I didn't want to as it wasn't needed for DX...he said symptoms and blood were enough. I know there are a ton of people here with neg blood work, but symptoms so they get the SjS diagnosis.

I, myself, am glad I have the blood work to "back it up", as my family thinks I am just lazy, and a complainer. 

Also, my thyroid is enlarged, and there is NO neg blood work to show why. I think it MAY be related to the Sjorgen's...

[gphx]

They're going to put in plugs and then do a Schirmer test? I'd suggest they do it the other way around. The reason for this is that there's not just one possible tear problem, there's two, quantity and quality. I'd thought my own eyes were dry due to a lack of tears for decades. Turns out my Schirmer test was ok. What I failed was an evaporation test. Tears typically contain oil that keeps tears from evaporating for ten seconds or so. Mine evaporated instantly. Conclusion, my oil glands are apparently destroyed, not my tear glands. The tear glands are just overloaded trying to keep up. For this reason I'd recommend they complete testing to make sure they know what the problem is before trying solutions.

Obviously Sjogrens causes sicca symptoms. People with other diseases such as diabetes, rheumatoid arthritis, and probably others can fail the same tests as people with Sjogrens do. Lymphocytic infiltration of glands by autoimmune cells is a common theme with all three.

Some people are seronegative and biopsy negative for Sjogrens and say they are Sjogrens. They may be right. I'm negative too but am confirmed sicca positive meaning dry eyes but not sure of the cause. It may not matter what the label is because if the same lymphocytic infiltration is behind different causes of sicca we may all be dealing with the same thing in the end anyway.

Not long ago I found out I have blood glucose issues and thought maybe it was the explanation for my symptoms and I don't have Sjogrens at all. Then I found out the root cause of diabetes for many people is lymphocytic infiltration of pancreas eyelet cells, a process with the same name as that which destroys the tear and salivary glands of many Sjogrens patients. I find myself wondering now if many diseases have the same root cause but end up with different labels depending upon where in the body they happen to be expressed. The idea seems to open a pandora's box of possibility. Maybe people with AI diseases tend to have others because they're the same thing expressed in different places.