If I were you I wouldn't get the lip biopsy. For one, they are very painful (a lot of nerves are in your lips.....that's why kising is so nice!). There's not a lot they can do for SS anyway, so it's not like putting yourself through this is going to help you get better treatment. I cannot think of any benefits of having it.....other than of your dentist making $$ off you.

I don't think there are thousands of glands for saliva. You can have four blood tests done that are not painful or intrusive.
ANA
RF
SS-A
ESR
IGs
shirmer test for the eyes...they can check saliva flow.
...they are about 70% conclusive. Why have a lip biopsy if they believe and are treating you for SjS. ESPECIALLY, knowing they get it wrong so often! Go read my post on the lip biopsy.

....you don't need a lip biopsy ....if these other tests are positive. I haven't... nor will I ...its redundant and a chance for an infection to boot.

http://en.wikipedia.org/wiki/Salivary_gland

Thanks. You're both confirming what my common sense is telling me. I have had the blood tests, and have the rheumatoid factor and a positive on the SS-A once but not the second test. However, I have many of the other symptoms plus the genetic component on both sides of the family. My sense of this is that this doctor wants material for her research, but, while I applaud this research and have good feelings about the intentions of the doctor, I'm not feeling much like being a guinea pig. I'm too tired and have too many "down" days to want to spend any time or energy on this.

I'm going to stand on my soap box on this one...

This is very hurtful to read this. If you already have positive labs for SjS why on earth is this Dentist recommending such an invasive procedure? Go on line and research some stories about patients who have taken 2 years to heal, and some who never do. There is risk involved in this as well as pain.

My prior ENT Dr. insisted on removing my submandibular gland without even completing any conclusive diagnostic testing and outright told me that if I did not get the surgery he would no longer be my Dr. Guess what, he is no longer my Dr.

At first I idolized this Dr. because when I came to him with the worst flare of my life, he actually performed a procedureto dialate the Wharton's duct to drain the gland.

Why did I idolize him for this? Because I previously went to a Dentist at a teaching hospital/school to have a Sialogram performed which is a CT scan with contrast. Did you know that a CT scan with contrast is NOT the correct test to do when a salivary gland stone is suspected? Do you know that this Dentist didn't even try to insert the lacrimal probe into the correct duct? The Wharton's duct is located under the tongue. You can see it if you lift your tongue up. It's below that stringy piece which connects the tongue to the floor of the mouth. This quack of a Dentist was attempting to insert the probe into the side of my mouth into some duct that I cannot even say truly exists! He did NOT even ONCE attempt to insert the probe into the Wharton's duct. After 1/2 of hour+ of this nonsense I left with absolutely nothing accomplished. This wonderful training Dentist had whose best intentions at heart? Not mine... however he did say that there would be no charge for this sham. A few weeks later I did receive a bill for $1,500. I called my insurance company and told them not to pay it as the procedure was never completed. I called the Dentist and I called the billing dept. numerous times before this bill was properly settled. This took months of aggravation, many months.

There is goodness in me and there is goodness in you which makes us trust these so called professionals. We would never consider these medical professionals would do such things. We put our lives and trust into their hands. We're taught as children to respect trained professionals and authorities. There is a reason Dr's carry malpractice insurance and if either of these Dr's I write about here are indicative as to why then we know why such insurance exists.

I was a naive fool in both scenarios. I believed the ENT and I believed the Dentist when he told my duct was atrophied and necrotized, which means DEAD by the way. What duct was he talking about? Her eis a link which explains the duct associate with the gland I had issue with: http://en.wikipedia.org/wiki/Submandibular_gland

I don't believe your Dentist has your best interest at heart at all. I also don't believe his desire to perform this procedure has anything at all to do with research as much as it does to show off his surgical abilities to his trainees as he has a bonafide specimen - which is YOU. YOU are a specimen. I was a specimen. This is sickening. We need to understand this going into these teaching facilities and we don't.

Medicine is not what it used to be. It is no longer a calling and a passion and a desire to help humanity. It is a business and we are fools to believe otherwise. Not everyone who gets a degree is qualified - in my book.

A person today needs to be very mindful about putting their trust into a Dr. There are good ones out there, but even those few rare gems are so busy with patients that they don't have the time to do the research and put enough thought into each and every individual who comes into their office.

We do need to be our own best advocates and trust our own instincts and learn to be a little more cynical and skeptical about we're being told and while we're busy believing lies because we've been lied to our entire lives, start listening to that little voice inside of you that says, this is NOT right. THAT is where your trust needs to lay...

Please be good to yourself and pay attention to what YOU have to say to YOU! Don't take every word your Dentist (or Dr's,) say as gospel. Do your own research - learn on your own. Years ago we didn't have internet and all of this information available to us. We were at a Dr's mercy taking every word verbatim and did not question. Ask questions, insist on being heard and if you get an ENT or Dentist like I had, RUN!!

Being your own advocate is imperative to good care! I've said it before and will again do the research needed to be sure your current doctor is qualified and well read on SjS or move on.

Don't be scared to ask questions like where did you train what do you read to stay updated. They cannot handle a few questions again move on.
Tossie is correct, they ain't all the same. I have two direct family members in medicine ones a doctor - the other a ER-RN with lots of experience. I've hear horror stories about doctors doing stupid stuff.

Me I didn't get lucky finding my doctor I got informed then got lucky he lives close enough by to get to him. He gets it- he listens - he is on the ball.

Again, why have a lip biopsy for someones study material - screw that. An infection in your mouth would be serious nevermind as mentioned a nerve is struck or they don't have a lab good enough to read the results.
No, no, no- instincts say run , run....

If you already know- it makes NO-SENSE.

I was a Registered Nurse for 16 years and saw so many doctors walk into a room and use a lot of technical language and say a lot of things that left the patient's head swimming.
I have always encourage people to keep a journal with all of their questions written down. Leave room to write down answers. Ask your doctor about them and keep on with them until they tell you in a way that you understand. If you can't get them to do this, ask the nurse what he was saying. Remember these people are public servants and you are paying them good money to do their job. Without sick people they go broke. They may act like Gods, but they are not. And if you cannot walk out of the office feeling like you know more than you did when you got there, or if they refuse to listen to you...STOP PAYING THEM AGAIN AND AGAIN. (I don't mean to not pay what you actually owe) Go shopping and find another doctor who will treat you like a person, explain what tests are for and why that test is needed for you and how you may benefit from it, the same with meds. Sometimes I am willing to deal with a bad bedside manner if I have trust in the doctor's abilities, but not if they refuse to talk to me openly and honestly.
Gail, If your dentist cannot explain to you why each test is necessary for YOU and not the purpose of a test in general, chances are, they are not sure themselves, they just heard this test was done in general for this disease. They should explain the risks involved. ALL invasive procedure require that you sign an informed consent form. People tend to forget about the informed part. You wouldn't buy a car or a house if you didn't understand what you were getting into. Your body is much more important to you. Be your own patient and consumer advocate.
I hope you find the answers you need.

Thanks again to all of you. I, too, approach doctors with much skepticism and am reluctant to take any medicine at all. I'm very pleased with my internist, who thought of Sjogren's as a likely suspect the first time I went to her with the dry mouth complaint. However, she is not a Sjogren's specialist, just an internist with a love of rooting out an accurate diagnosis. I can see I will tire quickly of going to a different doctor with each symptom I have, as so many of you do.

Sigh...

And thanks again for taking the time to reply. You've confirmed my gut feelings.

I just have to add my two cents worth on this. I agree with most of what has been said and also agree that it does not sound like Gail needs a biopsy done. But I would like to point out that in some instances it is very helpful. It was for me. I agree that if the Sjogren's is secondary than a biopsy is rarely needed for a diagnosis. But I have primary Sjogren's. My bloodwork was always negative. I had very dry eyes resulting in scar tissue and my mouth was always dry. I had unexplained pain in some of my joints, stomach problems, flu-like symptoms, and was always tired. For years doctors treated my like a hypochondriac and blamed my dryness on medications. I knew something else was wrong. The first rheumatologist (who was a jerk) that I saw said that since my bloodwork was negative that there was no way I had Sjogren's. Eventually I had the lip biopsy and it came back very conclusive for Sjogren's. After a few months it healed completely and I can't even tell I had it done (but I realize that there are risks with the procedure). I'm glad I had it done because now I have the peace of mind knowing what is wrong with me. I have also obtained Social Security Disability benefits and firmly believe that had I not had the biopsy results I would never have been approved. But I agree not everyone needs to have this procedure done and that Gail's dentist sounds a little suspicious.

SamUL - In your scenario I would get it done too. At some point, depending upon the process of getting a diagnosis play out, I would definitely consider getting one done. However, if I had blood tests which already diagnosed me, I would not.

Sam,

Agreed in your case it was needed also for ammo in your SSDI case it makes perfect sense. But, once diagnosed why would you have it done for a lab study?
Doctors always talk to me in laymens terms. I also understand a lot more than most average folks because being informed is 1/2 the battle. Once they know you know......things change.

Even lip biopsy don't always tell you the truth read the article I posted. It's actually a test tons of labs cannot get right. So -why bother- if the blood work is conclusive.
Mine was , its was off the charts - I'd even say have your testosterone checked too. (males) This is another indicator. Minor surgery is still surgery and a chance for infection.
Nowadays infections can mean a death sentence. I hope this dentist is questioned as to the motives.

Just to follow up with the rest of the story...The dentist (actually periodontist, I think) whom I saw has an excellent reputation and is trying to find out more about what triggers Sjogren's as well as bring it into focus for more of the medical community. One of the things she asked me to do was keep a food diary for her to look at when I returned, for example. I, too, am interested in the connection between what we eat and how we feel, so that would be a study I'd love to participate in. If there are changes in my diet that would result in improvements in the way I feel, I would be ecstatic! As it is, I've already made a few changes in my diet (loosely following a plan charted by Sherry Brescia, a hit I got when I googled acid reflux) that seem to have improved the acid reflux I've been having for the last 8 months or so. And I got the impression that the periodontist very much wanted to help with the condition. However, I'm simply not interested in a procedure that is not necessary and that doesn't make sense, though in Sam's case it very much was. In my case the blood test results varied from one time to another and were "inconclusive," but the doctors involved all agree I do have Sjogren's.

I spoke with her office yesterday when they called to let me know that the saliva test they did showed the presence of lots of yeast, so she has prescribed a mouthwash that I will begin using today. That in itself was worth the visit, I think, since I had been to the dermatologist for a yeast infection at the corners of my mouth. When I asked the dermatologist whether the Sjogren's could be an indication that I might have more yeast in my saliva than normal, thereby causing the infection, she said no. So I do feel validated somewhat by that.

One more note: If anyone reads this and tries to find Sherry Brescia online, be warned. She has one of those crackpot websites that goes on forever. I ordered her books, and was inundated by multiple emails daily. I got off her email list and read the applicable parts of the books and decided it was an easy experiment to try. It worked after one day. It involves combinations of foods that produce acid.

Yes, in my case the lip biopsy turned out to be a blessing. At the time I had it done I hadn't even considered SSDI. I had already taken an early retirement because I was spending so much of my time away from work going from doctor to doctor and was always exhausted. A year after I quit I finally got the diagnosis of Sjogren's. Then two years after that friends told me I should check into SSDI. I went on-line and sure enough it was listed as a covered disorder (if you meet their criteria). Everything fell into place for me and I was approved very quickly. I also feel lucky in that the ENT doctor that did the biopsy had a good reputation so it wasn't too traumatic for me. But l do agree that this is not a procedure everyone needs.

Mouth associated yeast infections can result from low salivary production... http://www.associatedcontent.com/article/754719/thrush_implications_for_patients_with.html?cat=70

Can also increase vaginal yeast infections due to vaginal dryness. Fun is.

Unless I misread the post... I'm sorry.

Yep...Haven't had one yet, but OF COURSE that's what I thought of first!