Testing Positive for Sjogrens with a Lip Biopsy

Jessa78 - at the end of the day there’s no right or wrong answer here because the biopsy can potentially damage nerves or, if performed badly, can leave troublesome scarring. But if, like me, you need clarity and already have much oral pain around your lips and gums - then nothing to lose and all to gain. Whatever anyone says here a positive test result is definitive but there’s a possibility that it will be negative and then you will be none the wiser I suppose. This thought troubled me and I think it is why many decide against - because they would rather assume they have Sjögren’s. Here in UK no rheumatologist will treat you systemically for SS without confirmation though. 

Jessa you would not believe how many of us with SS, go undiagnosed for years!!!!  As with many Auto Immune diseases, they can be extremely difficult to diagnose.  Mostly because so many of the symptoms can mimic one another.  Joint pain, lupus, ss, ra, scleroderma, fibromyalgia, biliary cirrhosis, even raynauds, and the list goes on, and so on.  We are a nightmare for the doctors!!  And some doctors are just not good listeners!!!  We are the only ones that know our bodies, and we are the ones that have to either make them hear us, or find one that will!!  I am blessed with great specialists, they all communicate with each other, and keep me going!!  Not everyone here in the U.S. or other Countries are so lucky!!  I live in Idaho, so not a huge city, but really great doctors here, and they have the time to take with their patients.  We have had a good Governor that has watched out for his State, and we have good insurance, he made sure we have our own insurance of Idaho...not a presidential plan for many years!! ?  Not many other States can say that!  So I am very thankful!!  You were very lucky you were diagnosed so quickly for sure!!!!  I know I was sick with something since I was a teen...They called it "some sort of inflammatory disease"...that's when I lived in Northern California 45++ years ago.  But, they didn't know what it was., or have a name for it back then.  I am 63 now, and only in the last 8-10 years have they finally figured it all out!!  Some in the last year or 2!!  Auto immune things are crazy things for sure!!  They don't always show up in our blood work for years.  For me, the liver, kidneys, intestines, and so on is bad, but the fatigue is just the pits!!!  I used to be a fit person, I couldn't sit still, my husband used to call me bouncy, I was here, there and everywhere.  Now I feel like a slug, always tired, I fall asleep at the drop of a hat. Just stupid!  But, it's just the way it is, and I've learned to ask for help now, I still hate it, but I do it. I get frustrated when I can't do something on my own, but I have a wonderful husband, and he can still make me laugh, even when I don't feel like it, even after 40 years of marriage!!  He has been doing all the grocery shopping for me, for months now.  Like I said, I am Blessed!!  He even brings me desert at night!!!  

Hi Jessa after the rheum diagnosed me with SS (I am an expat in the Middle East) on basis of my swollen joints and very dry mouth he also asked for a blood test and lip biopsy (to rule out SS he told me) after starting me on plaq. The blood test came back positive but I balked at the thought of lip biopsy as I was going on holiday. On follow up visit he saw on my file that I hadn't had the lip biopsy. I told him that my mouth was now back to normal and would the lip biopsy still show as positive for SS and his reply was " It might not test positive now as my mouth was ok"  So I decided not to have the lip biopsy ; it didn't make sense to go through that if my bloods were positive. If your bloods are positive then cant the insurance accept that as valid to pay for your treatment? 

?I am a Brit so totally ignorant of the USA insurance rules

I was thinking of having a lip biopsy.  My Rhemo Dr says no because blood work neg. But she is sending me back to my oncologist for a bone Marrow. Will it show anything towards SS.  My ENT Dr is the first one to mention SS.  I am on Percocet for my Spondylosis.  My joints are so painful. My mouth isn't dry all the time now. I had Thrush so on med for that The salty taste is bad worse when I drink water. I am loosing wt. I lost about 30 lb .since Dec. Because of the problems with my mouth When does salty taste stop?  I am so happy to be on this site everyone helps me I love reading very educational to me TY All again.