Hello all, what a kind supportive group I have stumbled upon in my search for answers about Sjogren’s. I have no Dx but have a feeling I have Sjogren’s. I am 33 years old and have a 16 month old son. Last June I was Dx’d hypothyroid. I felt better after getting my thyroid stabilized but then went down hill at the beginning of this year. I couldn’t exercise or participate in sports like I used to, and my husband thought I was losing my mind with all the fog and memory loss.
I finally convinced a new doc that this was more than just hypothyroid and she ran an ANA panel on me. It came back with positive SS-B antibodies but negative SS-A antibodies, all others were negative as well. I also have hashimoto’s based on those tests. This was on Wednesday and I have yet to hear from the doc. I have swollen glands in my neck, and dry mouth, so when I did a thyroid ultrasound today I had them pass the wand over my glands so the doc could see those too.
From what I have read it can take a while to get a formal diagnosis, but I am already optimistic that we are on the road to some answers.
Well, I pecked out my long story on my iPhone and must have hit the wrong thing and everything but the last sentence disappeared!
Thanks SK, no giving up here just plowing ahead and looking forward to being able to treat my symptoms correctly with an accurate Dx.
The on call doc called at dinner time to confirm my Sjogren’s and Hashimoto’s. It was nice of her to not leave me hanging over the weekend. So off to find a rhumatologist and endocrinologist next week.
I googled Sjogren's clinic near Ft Collins and this was the first thing that appeared!
I have so many advanced symptoms of SS. I fall into the 30% of SS people who test negative for every test despite having Advanced SS! You just need to get a doctor/doctors who believe you or one Doc to say you have it regardless of test results. It was my eye doctor who insisted on the DX. He said I had the 3rd dryest eyes he had ever seen. He said they were so dry, it hurt him to look at them. The test he did, showed all the white of my eyes a horror color green. He didn't even need a microscope to see them, he had me look in the mirror & it looked like I was ready for Halloween with the green monster eyes. All my symptoms added up to the Dx. If you test negative, you can still have SS. Please take my word for it. I had one foot in the grave but thanks to my docs & my persistence, I know I have SS despite all the negative tests! I have made some progress! I had some blood tests done for food toxins. The tests are not standard & are not covered by insurance. The doc I went to just charged me for the cost of the tests. I had over a dozen food toxins. In less than 6 months off the toxic foods, my pancrease was healed. My pancrease was failing & I had chronic pancreatitis. I had to take 24,000 + X 4 mg of creon with each meal to be able to digest any nutrients from food for 5 years. I was getting worse & worse until the food tests. I can now eat without the creon & my pancrease is working normally now. Never give up trying to get as best as you can. I still have SS & lots of problems but I'm going to do my best to see if anything can get better for me. Just keep going to any doc or all the docs you can think of for help. You have to be your own advocate! God bless you & keep trying. I love you & all my SS family. XO's!!!!
I had the same symptoms as you huge swollen glands on my neck as big as golf balls, I had an extremely dry mouth and could hardly eat anything and I had a baby I think she was a few months old my daughter, and I was 31 when I was diagnosed with SS you are going to feel all sorts of emotions but getting information and staying informed is the way to go I have had SS now for over 21 years,, and I am always looking for information,, on anything to do with it,, diet,, or anyting else that can help,, natural remedies,,,,keep talking,,,,, I wish you well,,, on staying well ,,,, with your journey with SS
I, too am amongst that 1/3 that tested negative for every test given. My eye doctor looked at my eyes and said he thought I had SS. Then my dentist looked in my mouth and asked if I'd ever heard of Sjogrens. And my ENT looked in my mouth and said, "I don't even need to run tests, you have Sjogrens." But he did, and they were negative. So please, hang in there. Positive or negative, just knowing that something is being done and there are people out there who truly "get it" can be the best medicine and the biggest blessing. Hugs to you.
I have a question. Is one's pancreas always involved when SS is present? I have digestive issues, and have for the better part of my almost 70 years.