Anyone have Sjögren's with seronegative labs?

ENT biopsies the glands in your mouth
Eye doctor does two test for Sojourns. I got diagnosed this way. Then six months later my labs came back positive.
The dentist has no part in diagnosing Sojourns.

@lynda12345
That's interesting about the "soft signs of MS". My two sisters have MS and both lost sight partially due to optic neuritis.
But then you discuss Sjogrens affecting the nerves. I have also read this. It isn't discussed much, except among people living with it!
I enjoy seeing how everyone has learned to cope...and keep on living!
Also, you have blown my mind with the salty scalp! Never heard that before!

@astaingegerdm
Well I hope the good news continues keep us in the loop😀

Have a question for those of you with Sjogrens.. I have signs of Sjogrens and have tested negative twice. My ANA tests did come back with a strong positive for Lupus SLE, but the rheumatologist does not think I have Lupus.. Thinks it is Hashimotos Thyroid. I have had full body hives for two years and geographic tongue with a burning mouth/tongue/and some discomfort at the back of the throat. Also the metallic taste. I keep asking various doctors about the burning mouth and throat discomfort being related to Lupus and or Sjogrens, but all say no. Does anyone here experience mouth and throat issues besides just the burning? Does your tongue look kind of scalloped with places around the edges? Would appreciate any responses. Feel like doctors are tired of hearing my complaints and just want me to deal with it. I want to find the cause and not just deal with what is happening. Hope everyone is having a great day!

Need an early Sjögrens panel instead of regular autoantibody tests, and a lip biopsy, ask an ENT or an oral surgeon who understands Sjögrens disease to do it. There's other blood values that point to autoimmune disease like C Reactive protein, Sed rate and others. You should be getting blood work at least once or twice a year to try to find the auto-antibodies. An immunologist also can test to see if you have an Immunodeficiency Disease which can miminic Sjögrens' symptoms.

@slem Your doctor is dismissive of strong positive for Lupus SLE? Get a new doctor. Yes, mouth and tongue issues, crevices, scallops around the edge. Dry burning mouth, which isn't only a Sjögrens symptom. It can even be RA. But do you have joint pain or other symptoms with this?

@suee86 I am thankful that I do not have joint pain, which is one of the main reasons my Rheumatologist doesn't believe I have lupus. I have had other issues for decades such as low thyroid, vulvodynia and the feeling that things are crawling on my scalp or on my skin, along with strange tingling and numbness at times. And of course very painful "eyeball" headaches and sinus issues. I had hives once in my 20's for a year and a half with no known cause. Had hives again 10 years later for a year with no known cause. Nothing in my 40's and now in my 50's have had the hives for 2 years and still have them. For a while I would also get strange rashes and would feel like my skin is on fire and sunburned even when I had not been out in the sun. I just want someone to tell me why I am getting the hives. All of the doctors just say I will probably never know and to just treat the symptoms.

ENT- biopsies the glands in your mouth
Eye doctor does two different eye tests
They come back positive you have Sjogren’s. You must have both doctors if sero-negative.
I had all three test and my labs came back positive six months later.

@lynda12345
I'm sorry you go through all this. Myself I have gone through for yrs and know I have sjögren.
I've been recently diagnosed with sarcoidosis with a ct scan, pet scan then a biopsy of several enlarged lymph nodes I've had for a few years. But with this I know see a bunch of doctors because it can effect different organs with granulomas and also cause different autoimmune diseases and because I've had symptoms of sjögren's syndrome for yrs they just did a lot of bloodwork for it. She did say that because I had some come back negative before we will probably have to do the lip biopsy.
Now about you talking about drinking a sip of water before bed. I read that about people and how they wake up with headaches become constipated. That time for me is where I'm more thirsty, my mouth is more dry and I drink more water. I do buy this small tube of stuff from the store its blue and its only the size of your finger and its thick. You put a small amount in each eye before bed and you wake up where your eyes feels great, not itchy. For your skin I put a nice body oil on after shower while your skin lightly wet wait a couple minutes then add thick lotion on top of the oil. It helps big time. I hope this helps. Have a great day

@angelbear1968
Sorry to take so long in answering I like the idea of baby oil after shower when you are wet but also moisturizer with cream after good idea!!!
And yes a gel or ointment on the eyes at night helps
I just had a big flare up not sure why 🙁 sorry to hear about sarcoidosis keep your chin up I know it’s hard easy to say 🌞🌞🌞🌞🤞