NO!! I FEEL I HAVE BEEN PLAYED WITH FOR OVER A YEAR NOW.. MY PRIMARY DR SAYS TO GO TO VANDERBILT.. HE THINKS THE RHEUMY'S IN OUR AREA ARE NOT THE BEST.. I AM SO DISCOURAGED AS THE MORE I READ I SEE HOW DIFFICULT SS IS TO TREAT.. THE FATIGUE IS WEARING ME DOWN THE MOST. .

Although frustrating be patient it is not unusual for the test to be repeated to confirm diagnosis. I don't know how long you have had symptoms but a month is really a short time frame for diagnosis. You may also be asked to have more testing and a lip biopsy. Hope you get answers soon.
-Well Wishes
Jackie
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Unfortunately, I have read that it can take up to ten years to get a definitive diagnosis, since SS is so much like other AI and connective tissue diseases. I probably would have never known except that a neurologist ordered every test in the book and my ANA came back speckled, so I was send to a rheumatologist right away (there's one in the group practice where my primary is). She didn't think I had RA because I don't have the red and swollen knuckles, so she ordered two blood tests I didn't know much about. When I went back, she looked at me with a kind of sorrowful look on her face and told me I had Sjogrens. She had had the SS-A and SS-B blood tests done. So I have primary Sjogrens, with connective tissue issues and vasculitis, determined by a biopsy. Who knows what else will crop up as I continue down this rather bumpy road?

AKriel,

Boy, can I relate to your frustration! When I was finally diagnosed after literally decades of strange symptoms, I actually went to a rheumatologist and said "I think I have Sjogren's Syndrome." You know it has to be bad when the patient can finally figure it out from their symptoms after years of being ignored by doctors. Sadly, it's pretty normal. On another Sjogren's support e-group, a gal wrote this week that she just finished up nursing school, and was shocked at how little she learned about Sjogren's in her training. I'm a dental hygienist, and Sjogren's training even now is sadly lacking, even though the results of dry mouth can cause catastrophic decay and we are all about preventing problems.

Some doctors are reluctant to actually diagnose Sjogren's, since they don't know that much about it and aren't too sure what to do about it even if they do recognize the disease. After all is said and done, treatment is symptom management since there is no specific Sjogren's "pill."

When I finally did get the typical blood work, ANA, SSA, SSB, ESR, RF etc., the rheumy confirmed my suspicions but told me he didn't know what to tell me about living with it. Then my HMO insurance sent me to another guy, and he said the same thing. I tried to manage my various problems by researching them out and then presenting my primary care physician (PCP) with articles from the NIH website. He then sent me to specialists who confirmed the additional problems, GERD, interstitial cystitis, etc. It wasn't until I went to a Sjogren's researcher that I finally found someone who spoke fluent Sjogren's and who has helped me tremendously!

Even now after my PCP has known me since 1997, he sometimes discounts a new problem as a "Sjogren's thing," rather than trying to determine if there is something he could do to help me out.

You aren't alone. I suspect there are many who can relate to your impatience, so feel free to whine here. We get it!

thanks you all!!!!!

It is really wonderful to be able to get REAL GOOD ADVICE on SS, like you said, the dr's and rheum's can't always help with advice only with the lable of SS.