Sjogren’s Syndrome – Introduce yourself and meet others

He only say I don’t have Sjögren’s but I have a lot of inflammation in my body and it can be from a common cold to cancer and 300 other things in between.

@suzetteirons Well, it seems to me that the doctor you saw wasn’t much help. Can you go to a large medical center or university medical center? They should be able to help. That’s what i had to do. The local doctors, when they finally paid attention, didn’t know what they were dealing with. My husband was able to get an appointment at a university hospital in a city near us. They were able to diagnose my problem and still direct my care. Is there a university hospital or major medical center somewhere near you?
If you might like to be seen at 1 of the 3 Mayo Clinic’s, here is a link. http://mayocl.in/1mtmR63

I agree with Becky. If the doctor doesn’t think you have Sjogren’s, you certainly have something. So, more tests would be in order to find a diagnosis. Don’t give up!

you can do a mouth biopsy.

I had one set up but then I was not feeling good so did not have it done yet. But Doc said that it was the best way to get a diagnosis for Sjogren's. Some come back not positive if they have not had it for long, but then the second one it it positive. research it on line, see what you think.

Sjogrens does not always show up on blood tests. About 20% of people with it are "seronegative" that is why the European criteria was developed. Also Sjogrens is now called "Sjogren's disease" not "Sjogren's Syndrome" The criteria is available on the website for the Sjogren's Assn. Good luck!

I just want to add my experience with Sjogren like illness.
A few years ago I was seen at Mayo for nondescript gastrointestinal inflammation. It was a form of autoimmune inflammation. At the same time I developed dryness of mouth and eyes. Little saliva, on and off enlarged salivary glands, red blisters inside lower lip and cheeks. Eventually, my teeth became almost see through due to lack of saliva.
All testing several times was negative for Sjogren’s.
The general opinion was that it was an autoimmune condition.
After treatment with immunosuppressive medication, all gastrointestinal symptoms cleared as well as the dry mouth and eyes.
Actually , now I drool involuntarily at times!

do you remember what immunosuppressive medication that was?

It was Imuran. I took it for several months. It was very tough on my body - I had several bacterial infections. I stopped when my blood counts were low. I was in remission then and have not had any recurrences.
However, I was drained for months afterwards, but it was worth the risk.

I am scheduled to get a lip biopsy on October 20th because the only positive test results were the ANA and dry eyes. The other tests were negative. I was just prescribed Restasis but am reticent to begin as I've heard it can cause cancer. Was your lip biopsy painful and did you get general anesthesia for the procedure? Thank you.