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Old 02-23-2012, 06:08 PM   #2
Join Date: Feb 2012
Location: Kansas
Posts: 2
lifecyclist HB User
Re: Finding a Sjogren's Specialist

One of the problems with Sjogren's and autoimmunity is that blood tests may come back negative. Even if your ANA was positive, it would only rule in several possibilities. You need to find a rheumatologist to give you more specific blood tests including SSA/SSB, which is more specific to Sjogren's, and possibly others if you have symptoms that might suggest other autoimmunity.

I sympathize with your plight. I've seen a number of doctors and specialists over the past year who've suggested other possibilities but Sjogren's fits most closely. My blood work comes up negative despite symptoms and family members with autoimmunity. Unfortunately, autoimmunity like Sjogren's can mean learning to manage symptoms despite no firm diagnosis. You will need an ophthalmologist to help/monitor dry eyes, good regular dental care (make your dentist aware of dry mouth--he/she should have suggestions to help with that and can give prescription for high fluoride toothpaste), and you may require a dermatologist, gastroenterologist, etc., to address other issues.

I know this probably wasn't helpful to your specific question. There are websites that rate doctors you can search by specialty and city to give you some other feedback. You might look for an arthritis support group to get recommendations as many with RA also have Sjogren's. I do think it's worth seeing another rheumy if you weren't happy with the first one. Good luck.