im sorry u r going thru it-the difficulty getting a dx, as well as dealing with the symptoms that havent yielded a dx...YET. double edge sword we with autoimmune diseases suffer with. gotta deal with our disease , as well as medicine that hasnt caught up yet. my mother went thru YEARS of not getting the correct dx 4 her lupus. hang in there, and be as proactive as u can b. know its ok to voice ur frustrations, as well as stand ur ground. ur probably weary of the "doctoring" process, but if u dont get satisfaction from this doc, i would encourage u to seek another opinion. good luck-im rootin 4 ya!

Thank you so much. I appreciate you having spoken from experience.
Tuesday is my big day.
I will take your advise.

Letcha know 😊

Some people get a lip biopsy to test for Sjogren’s. My rheumatologist didn’t think that was necessary and that I didn’t have it. I do have some symptoms and have been asked by multiple doctors if I have been tested for it. But, I trust my rheumatologist and now believe I do not have it.

I had a biopsy from an ENT they take four glands out of your mouth.
Second test an eye doctor test for Sjogrens. Puts a piece of special paper in your eyes. Normal is above 5 mine was less than one. Second they look at your cornea and mine was all scatched up.
I was positive for Sjogrens.

I need something. I’m so tired of being unwell. I have severe digestive motility and it’s a nightmare.
I’ve been bordering Sgogrens since 2017 and it went on the back burner. My skin is so dry,itchy and rash in different places. My scalp itches like head lice but I don’t have any. My eyes are severely dry. They put in tubes but I get up in the middle of the night and driven them in eye drops to see. My mouth is severely dry my tongue looks off. I suffer sores inside my mouth. My body aches and all my fingers on palm side under the skin have off white lumps. I’m so tired of no energy.
I do have hypothyroidism,Raynauds too. I’m just lost. Sometimes I think they lose interest when you get older and doctors don’t care as much. YES, I’ve tried and done it all. Nothing works.

Hi. I’m not sure what your symptoms are to help you better but I told my rheumatologist all of my symptoms and changes. To this day, I keep telling her everything because this disease affects every part of my body and all its systems. I also made sure I had the specialist to treat and evaluate each problem. I asked her what I can do to ease some of the symptoms or prevent them from getting worse. If you can get a specialist who understands Sjogren’s disease not as dryness but as a systemic disease then that’s a better doctor for you. I have come across some specialists who thinks that I’m only suffering from dryness.
I hope that these help you get started with your care. I also would suggest joining a support group because there will be times of difficulties. It makes it easier to have someone who truly understands what you’re going through. Take care.

Thank you!
Took some searching but I did find someone who specializes in sjogrens.
See her Tuesday!
Fingers crossed...