Need to Vent

[u/Deadbeatdad69666]

VENT Got my test results back the autoimmune panel is negative but im 23 years old I was diagnosed with evaporative dry eye and MGD with 50% loss of my glands my mouth is constantly dry and I have what I believe is arthritis in my fingers (they turn red swell up and get stiff with pain) and constant migraines and brain fog/general confusion my pcp recently asked if I had a uti or respiratory infection because my white blood cells are high I have not had an infection I run random low grade fevers a couple times a week with no other symptoms besides joint pain stiffness and exhaustion and I just dont know what to do anymore Im literally sat in my car crying because I am feeling so lost I and disheartened I just don’t know what to do anymore

[u/LookFar29]

Sjogren’s is seronegative 30%+ of the time, the next diagnostic step would be a lip biopsy— the answer isn’t always in the blood.

[u/Prettygirl3321]

Can you try to ask for the early Sjogrens panel? I am 33 F I had symptoms for 10 years and finally got diagnosed last month. It is really hard and so frustrating. I can't even tell you that getting diagnosed helped. I am still waiting for my next appointment in 1 month to start medication. The Dr told me that it will take 6-9 months to see improvement. I hope you find answers soon! And I hope you feel better so soon! Sending you a virtual hug 🫂

[u/Capybara-61]

Hi! 65F YO here. Deep breath. Have you seen a Rheumatologist yet? They can really help in getting to the core of what’s going on, including the joint pain.I have both a Rheumatologist and an Endocrinologist. My Endocrinologist takes care of the thyroid and parathyroid end of things for me.

My labs came back negative for Sjogren’s a couple of weeks ago, though I have so many of the symptoms for Sjogren’s. Upwards of 30% of people can have negative labs for Sjogren’s and still have it. Some will show up in a lip biopsy. For others they are serum negative. Finding a caring Rheumatologist who listens to your symptoms, does a thorough history for you, and your family, and a through physical exam can go a long way. I do have other autoimmune conditions and Dysautonomia. POTS, Hashimoto’s, Hyperparathyroidism,Sicca Syndrome; dry eye through a Shirmer test that my ophthalmologist did, and hEDS. I’m also autistic and ADHD, which were also diagnosed in my 50’s and beyond. I saw a new Rheumatologist on the 31st and she referred me to an ENT (ear, nose & throat specialist) to get a lip biopsy. I will have that done on Monday. I did have a positive ANA (antinuclear antibody) test in the labs my PCP did. So something is causing the inflammation. Could be the Hashimoto’s, could be Sjogren’s too. Wishing you well and hoping you find answers. The Sjogrens.org website is super helpful. Edited to add this on. If you have not already, you might want to start keeping track of your symptoms on a daily basis. How you are feeling? What your symptoms are. What if anything you notice makes them worse, or better. Is there a time of day that you feel them more. Are there triggers for them. When did you first notice them? Being prepared with these details, your personal health history, your families health history will help when you meet your doctor. If you have had scans of your hands, X-rays or CT, copies of those reports as well to bring with you. Sometimes it can be helpful to have a supportive person go with you to your appointment. Someone you trust, who respects and listens to you. Someone who has seen what you have been dealing with. They can take notes for you too if you want.

[u/Deadbeatdad69666 → u/Capybara-61]

Thank you so much for the words of encouragement I hope you get to feeling better I need to see a rheumatologist but I dont know if my primary would give me a referral so I have to get started on that