Sjogren's Syndrome Support Group
Sjogren's syndrome is an autoimmune disorder in which immune cells attack and destroy the exocrine glands that produce tears and saliva. It also associated with rheumatic disorders such as rheumatoid arthritis, and it is rheumatoid factor positive in 90 percent of cases.
My primary care doctor thought I had Burning Mouth Syndrome eight months ago. I have been to multiple specialists. The ENT is the only one that really has taken me seriously. My mouth, nose and throat are worse than my eyes. I only have blurry vision. The ENT diagnosed me with Rhinitis but her treatments just work to a point. The fatigue is bad. The ENT finally decided to check antibodies. But my ANA and SSa were negative and the SSb was only slightly elevated 3.3. Is it possible I have Sjogrens with these results? If it isn't Sjogrens what in the world is it? I have Addison's disease and Hashimoto's and lost my ovaries first 30 years ago after my only child was born. I am also losing my hair by the handfuls. Two of the specialists think that is my thyroid. Would greatly appreciate your input.
Thanks.
Nancy
Thanks.
Nancy
Maybe, you should go to a rheumatologist. I know it's said that it can take up to 6 years to diagnose Sjogren's. You do have another autoimmune disease , that's how our rheumy knew to test for the Sjogren's. I hope you find out what is going on.
Thanks for your reply and encouragement. The ENT is sending a referral to the rheumy and they are to call and schedule an appointment. The receptionist said it would be some time in February. Everything takes so long. I have seen seven specialists--not counting my primary care doc. Started with the dentist, then a dental pathologist, then a neurologist, the ENT, my endocrinologist (I think he really dropped the ball here!), then an allergist and a gastroenterologist. Each of them require time before you can get in. It is so important to find these autoimmune diseases early but how is that done. I mentioned Sjogrens to each doc and they said if my eyes were not dry it can't be Sjogrens. Well, I think they have waited long enough that they are starting to be dry but mainly blurry and itchy.
Can you tell me what I need to request when I go in? I saw a study where the combination of antibody results that I had was sometimes linked to primary biliary cirrhosis. My grandma who I inherited this from died from liver disease. I really want to know if I have any antibodies against my liver. My last liver blood work with the endocrinologist was ok. Can I ask for the liver antibodies be checked?
Thanks. How is your autoimmune journey going?