More importantly, what KIND of doctor are you seeing? You need to see a rheumatologist. There is a blood test that can be done but it is not accurate. I had a false negative. There is also a lip biopsy but not sure what doctor can do that. I was diagnosed without it, but I have secondary so the diagnosis was more obvious and also, I live a little over an hour from one of the two Sjogrogen's centers in the US - one in the east coast and one in CA. They sis a salivary gland scan and tested my eyes for dryness. SADLY, most doctors do know anyhting about this disease or how to test for it.

Hopefully others will have more suggestion, but you definitely need to see a rheumatologist.

I agree. A rheumatologist will be the coordinator, so to speak, of your treatment and diagnosis. My rheumatologist did many, many blood tests and also sent me to an ENT (Ear, Nose & Throat) doctor for the lip biopsy. I was also told that the lip biopsy is a special procedure that not all ENT's perform but the rheumatologist should be aware of who to refer you to if he/she feel it is warranted. Hope that helps and good luck. Sometime getting to the diagnosis takes time. Hang in there.

I am seeing a rheumatologist. If I am not having a "bad day" will the blood work come out negative? Is the lip biopsy painful?

You don't need to be flaring to have positive blood work, although 20-30% of the time the patient has Sjogren's but the blood work is negative. The lip biopsy if done at all should only be done by someone who does them all the time, like an oral surgeon or dentist in a Sjogren's study center like University of California in San Francisco. A regular ENT can really goof up the results by not picking the right minor salivary glands and then not having an oral pathologist read the results. Clinical symptoms are also a big part of the diagnosis. If your doctor will only treat you with positive blood work, you will need to go to someone else! A rheumatologist should be able to diagnose you but not all of them are able to help you live with the disease.

My eye exam was done by a dry eye specialist. He did a lissamine green split lamp exam to check for corneal erosions and damage to the lining of my eye sockets. That same day he placed plugs in my lower eye lid draining tubes that helped hold eye drops in my eye longer.

With a good dental prevention program, teeth can be maintained successful in spite of the dryness. I use Evoxac, a power toothbrush and Water Flosser (AKA: Water Pik) to stay out of trouble along with MI Paste, a mineral paste (look for other posts on the subject) and fluoride.

Good luck!!

The lip biopsy shouldn't be painful - a little local anesthesia, they make tiny slit and remove a few little glands, sew up the slit. I took NSAIDs for a day or so. Most people heal up quickly. I had some numbness in my lip for quite a long time, but it didn't really affect anything other than being annoying. That, BTW, was my only positive result for Sjs (secondary). You should do the tooth preventive regime in any case (see DryRDH post under "Dental Woes"). Hopefully, the doc will also do some scans to check for RA and other joint conditions. I hope you get some relief soon. It may be that you can get some pain relief before the results are all in. Hope it goes well!