Having been a number of national Sjogren's Syndrome Foundation meetings, your experience is actually quite common. I would believe the world top rheumy and find someone else to see now.

My blood work improved significantly on Methotrexate, and was almost normal at one of my appointments with my rheumatologist. He is a Sjogren's researcher, on the board for the SSF, lectures all over the world, edits one of the major rheumatology journals, etc. just to give his credentials. When I looked at the copy of my lab results, I said "well, I guess I don't have Sjogren's" since I had heard several people shortly before that being that that nonsense by some dopey rheumy. He went off on a rant about how annoying that was, and of course my labs would look better because that is what the medications were supposed to do...and on and on.

The problem isn't you. It's this new doctor. There has to be someone in your area who will treat your symptoms and not blow off your health issues because of some misguided interpretation of your lab work. It's not just labs for Sjogren's; it's symptoms too!!

Good luck! My current rheumy is my third. The first two were useless in dealing with every day living with Sjogren's. Some of my blood work was negative too but even they recognized the overall diagnosis of Sjogren's.

Thank you DryRDh!!!! Sorry I just noticed some of my post was missing; makes it read strange. She (the doc) was really big on SJS does not have any rashes and you aren't on any treatment for SJS(I am trying to avoid those heavy meds) and your numbers are different now(I'm not in a flare) and really nonsensical remarks.
If I want a Rheumy I will have to go about a 45 min. drive. Guess I will start asking others to recommend someone. Thanks so much for your response. It's tough enough having a chronic condition ,without encountering doubters.
I wrote a letter of feedback to this Doc; I hope it saves just one other patient from having the experience I had.

Believe me it is worth the 45 minute drive if you find someone who is good. I went to two that were absolutely horrible. One diagnosed me with Fibromyalgia, the other, calcium deposits in my joints and all of this without any blood tests. The one I have now I would not give up unless forced to. Of course, when strange things first started happening to me nothing showed up in my bloodwork but it did several years later.

My current Rhuemy says I do not have enough tender points for fibromyalgia but I also do have osteoarthritis, but just from my description of symptoms at our first meeting, he already told me that he would be testing me and looking for "sisters" of Lupus. I don't know this for sure but I would think sjs falls under the category of "sister".

Also, keep in mind that just because someone finished medical school doesn't mean they were at the top it could also mean that they were way at the bottom and still able to practice medicine. Do some research on the web about different Rhuemys. That is how I found my current one. I read all feedback about him and read his profile and was satisfied enough to try him out.

Thank you Whiteja; Love your doggie's face. I agree about the drive. I have had this diagnosis for over 10 years but because I wasn't on any treatment, she started questioning it.
I also did not have any reactions to the pressure points she tried ;BUT she called it "Fibro" anyway. It made me crazy..how can these people stay in business! She had the nerve to tell me that she was sorry to tell me her diag. I asked ,"Why are you sorry"; her reply was that she has alot of patients "scream and yell "at her when she tells them what she thinks.NOOOOO...you think??
It was hard but I smiled and thanked her for her time. I was crushed! Feeling more confident now; Thanks to this support group.Thanks to all.

Thanks for the compliment about the pooch, but she wasn't mine. I have three Chihuahuas. That little sweetheart was someone I found by accident and she spent the night with me and then went on to her foster home the next day at a rescue. Without these rescue angels she may have been put down. She was only a pup. I can only imagine how big she is now. Sort of remined me of a Saint Bernard. I have done some rescue work for a long time now. Not so much anymore as it takes alot out of you, but very, very satisfying when you can help these innocent creatures that have no choice in helping themselves.

Baloney on Sjogren's not causing rash...so many of my Sjogie friends complain about rash that when my rheumy asked the last time if I had any rash, I just replied, "Doesn't everyone!"

I drive 91 miles to see my current rheumy and pay out of pocket because he knows what he is doing. It's not cheap, but I always leave feeling like I got my money's worth. He has me feeling the best I have in years and functioning better than when I was first diagnosed.

Thanks dryRDH! I have to pay out of my own pocket too because I have a high deductible; but I wouldn't mind if I had a Doc like yours. Instead, I am going to get a bill from this last lady for "nothing" but grief.
I am concerned what my family doc will think when he gets her report. She might decide to tell him I am looney; just to cover her blunder. What is the best way to find a rheumy? Thanks to all for your kind words.

If you haven't joined the Sjogren's Syndrome Foundation (which I do recommend for their seminars and helpful monthly magazine "The Moisture Seeker"), you can still attend local support group meetings.

Not every state has one, unfortunately, but then a regional SSF conference might be worthwhile. I enjoy the national meeting too and have made friends from all over the world (literally.) It's nice to know folks who have to deal with the same junk you deal with, and compare notes, tips for surviving, etc.

The link for the US support groups is:
http://www.sjogrens.org/home/get-connected/support-groups/us-support-groups

or use this smaller version:
http://tinyurl.com/2cfm5wm

Thanks for your help...you're a Gem. I got the bill today for my lady Rheumy visit. $139.00 and of course, she probably sent her diagnosis of Fibro( which I don't have) to my insurance co. I hope my rates don't raise because of this.At my age, they are always looking for a reason and they have done it before.
That visit was such a waste; I might as well just opened the car window and thrown the money, to the wind. At least I have some idea how to find a rheumatologist ,after reading this forum.

No one suggested a lip biopsy. It's the only for sure diagnosis for SJS. Biopsy works for lots of diseases and they do not change with changes in blood values. Remember there are 105 auto immune diseases. It is very possible for your Dr. Or Drs. to be wrong, but finally get it right.
One question! Why are you seeing a Dr of Rheumatology if you feel your problem is not enough to take medication. I always say, if you have enough pain, stiffness, rash, burning mouth, burning eyes, no way to feel normal, can't sleep, infection in mouth,; if you have enough trouble you will swallow whatever you are told to take.

Gee Wilda... this is a "support group" not an inquesition. How are your comments supportive? Asking me why I am seeking a Rheumatologist. If you will read my post, I state that the symptoms have been controlable with the help of my family Doc BUT; recently they have intensified.
At any rate I will never be a patient who "swallows whatever I am told to take". I had a cousin die this past week who did just that;no questions asked! Not me; I will always be the soul determining factor of my treatment. Futhermore ; you don't know me and you have no concept of my everyday struggles.
As for getting it right ;I would think the guy(Doc) who writes on the subject and teaches at one of the top University, knew what he was doing. Maybe you need to reread the other posts.

I think of autoimmune diseases as a soup of common symptoms (arthritis, fatigue, brain fog, pains) and when a specific symptom appears, the whole thing gets a name or names. Rash - lupus; dry eyes - sjogrens; lots of pains - fibro. Maybe I'm a cynic, but as long as my rheumy understands what's going on and treats me for it, I'm not so concerned with the name. Yes, many people with Sjs have rashes, but what's in a name? I would say your local rheumy may not have much experience with AI. Good doctors are rare. A 45-min drive doesn't seem like much for a good doctor, especially since we usually don't need to see them very often. In terms of drugs, plaquenil is often the first one prescribed. It's not an immunosuppressant like the stronger ones. For me, it helped a lot with my symptoms with no noticeable negatives. Before that, I kept my symptoms at bay for probably 10 years with diet alone (for me it was no gluten, dairy, soy), but when the arthritis got worse, I went in for some help. When to seek treatment is a personal thing. With a rash, there might be topical things to help it that a good rheumy might know.