What all should I ask rheumatologist tomorrow?

[DKott27]

Next in line in my list is seeing a rheumatologist. I wanted to get tested for sjorges syndrome. Is there anything else I should ask him to do. Any other tests? I'm not familiar with this area but a lot of you guys told me I should see a rheumatologist

[farmgirl]

HI DK: LIke many Sjogren's sufferers, as is so common, I too do not test positive for any of the blood markers related to Sjogrens. What confirmed my diagnosis was the lip biopsy. It left me with a small numb spot that I rarely notice but was worth it to get a confirmed diagnosis. I would ask whether or not you could have a lip biopsy if the blood work comes back negative....good luck

[heyjude0701]

I'm reconsidering the possibility that I may have Sjogrens also. The suggestion to get a lip biopsy is very helpful. I have had severe dry eye for six years, tested negative for Sjogrens six years ago. Three months ago I got sick with vasculitis, which may be an autoimmune disorder. My skin has been extremely dry since I got vasculitis, and I still have a rash. I have more dryness in my mouth too now, but mostly at night. I finally got an appointment with a rheumatologist, it took three months (and that is after being turned down to get on the wait list for two other rheumatologists)! I had no idea that there is a dire shortage of rheumatologists in the US. My primary care physician ordered the ANA, ANCA and rheumatoid factor test; I tested negative on all three of them. But I read that the sensitivity and specificity of these tests are poor (meaning they are not good predictors of whether you do or don't have an autoimmune disease).

Farmgirl, do you know how common it is to have Sjogrens without testing positive in the blood work? How dry does one's mouth have to be in order to suspect Sjogrens? My mouth is not as dry as my eyes which are severely dry (both mgd and aqueous deficiency). My mouth is only a little dry, but more so at night. Since I got vasculitis my sense of taste has changed, and I am wondering if this may be caused by decreased amount of saliva. I used to love dark chocolate but it tastes bitter to me now. And foods that are very salty burn my throat.

DKott27, have you been able to get an appointment with a rheumatologist? If so, how did it go?

[MGD1701]

Hi heyjude
There is Sjo test in USA which can detect Sjogren about 4 years earlier than normal the blood test. It has been available at least for 2 years.

[heyjude0701]

Thanks MGD1701. Do you know anything about the properties of the test? Sensitivity? Specificity? Predictive value?

[MGD1701]

I dont know much details. please google, 'Sjo test'.