I had the same experience - I even had one doctor say, "It's only dry eyes." WT_?

Here's a good reference - and Venus Williams has done quite a bit to help with awareness.
http://info.sjogrens.org/conquering-sjogrens/bid/250226/Venus-Williams-Stands-up-for-Sjogren-s-Awareness

I have Lupus and Sjorgren's too...

Auto-immune illnesses rarely get the spot-light.

They do say Sjogrens is a sister to Lupus. I believe it is not quite as aggressive though. Could be wrong there but I do believe more people have serious complications with Lupus than those with just Sjogrens. However, that does not mean that we do not suffer as much pain and discomfort and some very weird symptoms like those with Lupus.

You are so right. There is very little awareness. Venus may have done alot for awareness but not in the medical profession. So many medical professionals just have no clue at all.

You're right. Hardly anyone has heard of it when I tell them that I have it. Even my doctor acts like it's no big deal. He finally gave me Plaquneil when I kept complaining of stiffness. He didn't even mention it to me till I asked about the bloodwork that he did to check for RA on my last visit. Then he told me that it was strange but that I had checked negative for RA but positive for Sjogrens. I had no idea what Sjogrens was so he wrote on a note (that I could barely read) and told me to Google it.

There is not a "blood test" to Dx RA. Is your doc a Rheumatologist ? If not, ask for a referral.

There are blood tests to diagnose RA, Lupus and Sjs. Yes I would suggest a different doc (a rheumatologist) if your doc doesn't take it very seriously.

I barely had any knowledge of this and he explained it and the severity of it. He doesn't take it lightly.

That being said it's not just one special test for each. It's a combination along with signs and symptoms that are used to diagnose.

Your RA factor is HOW they diagnose it. Also lip biopsies.
Most ENT's and family doctors and even dentists can take it lightly. Considered them uninformed and make it your mission to inform them.

A good rheumy with losts of experience in this field will NEVER take it lightly just the opposite in fact. They see the ramifications of it and how bad it can be. But , also remember most people get mild cases.

Also the AGE of the doctor plays a role - I have phamplets from the SjS foundation for ignorant doctors. I will say my neurologist , family doctor and eye doctor all take it VERY seriously.
I wouldn't use a doctor if he took it lightly and I would inform him in no uncertain terms. -and have :-)

When I was first diagnosed with RA and SJ, my rheumy told me not all RA patients test positive. I was one who did. My first bloodwork came back with positve ANA and a 'whopping' ro antibody count.

I've discovered also most people including medical are clueless about
SJ.
Heck I've tried to get educated from the doctors but how could they when they are clueless.
I have RA & other things a long with it. So I'm in pain management & he is one doctor who emphasized on noting it in my blood work.
Meaning when he first looked at my labs from my original RA diagnosis " you tested positive for Sjogrens?
Now I never asked why he noted that but I intend to.
It was obvious it caught his attention must be a reason why.
Sammy

Similar to mental disorders, because people cannot see anything physically wrong with you, they kind of see it as no big deal. They don't understand how painful your eyes and joints get or when you have an active day and you feel so exhausted the next day. They don't understand and can sometimes be insensitive- it frustrates me and can sometimes be discouraging.

Many doctors also do not know that it can also attack i nternal organs such as lungs, kidneys, liver, thyroid and rarely even the heart (according to my cardiologist).

I was diagnosed with Pulmonary Fibrosis related to Sjogren's Syndrome and didn't have dry eyes or dry mouth until several years later. That's why it is so important to be under the regular care of a rheumatologist who is very knowledgeable of Sjogren's.

You can also check with any nearby medical colleges to see if they have Sjogren's clinics as they are becoming more common at teaching hospitals.

My Lupus is now in Remission and yes, I would say the symptoms with that were a bit worse. however, I also now have SS. I agree with everyone, it is not taken seriously ... Even by doctors and many don't even know what it is. On days I don't feel well, I try to explain....but if exhausted, ill say my Lupus is acting up out of pure frustration , etc. I have donated to the S Society largely because I'm fed up with people and esp. Doctors not taking it seriously or being ignorant and I hope they can do something about it.

I think the over-riding issue is auto-immune disease. A site that I subscribe to, MD's in the business of holistic medicine, does regular editorials aimed at western medicine. A recent one was about the state of medical practice, if they cured auto-immune diseases, they would have no customers! All those ego-driven smart-alec jerks that went into medicine thinking they were going to make a fortune, might have to actually get a real job (and pray they never get sick). Please excuse the rant, I live in a small town in AR with only one rheumatologist that takes Medicare & he doesn't want patients with Sjogren's, not worth his time.

In response to diagnosis....Its important to note that RA factor and biopsy are no longer the only way to test. Sjo is a new blood test that actually looks for the presence of the specific antibodies created when one has Sjorgren's. And the precision rate is much higher than classis blood tests.
We need to stay on top of it as new research is happening all of the time.

It is true- no one knows about sjogrens and really it's alot like lupus. I also have sjogrens and lupus. It is frustrating because only if they knew how we felt and the fatigue and joint pain ALONE is too much to bear sometimes.

beekaboo- I am also in nursing school and am wondering/stressing out over how I will do because of my brain fog and fatigue. How are you dealing with it?