sero negative sjogrens?

@saffronsass yes it is not uncommon for the Drs to say you do not have Sjogrens. Some tests come back negative.
I know I have it.
It is disappointing to know the amount of patients told they do not have it.
We are our best tool!!! Sometimes it gets hard to deal with but I always say someone out there is worse than me. Chin up if anyone has some new info share it in all ears!!!! 😀😀😀

@lynda12345
Yes, I take Plaquenil, and I have been taking Restasis for my eyes. I’m also on allergy shots, since it seems like I’m allergic to everything. I’m almost positive a primary care doctor can prescribe the medicine for you, since you have already been diagnosed. Your doctor should be able to communicate with your physician regarding your previous medical records..

You might need to explain that it’s very difficult to see the original doctor due to travel and your age.
A compassionate doctor would do that. If she or he didn’t, I think I would need to find a doctor who would want to do that for me.

There’s no reason that your regular doctor couldn’t be able to order labs to see how you’re doing. The lab technicians know what is necessary,

I have found I've finally had to advocate for myself, and it seems to be working. I hope you have success with this. It’s not something that’s easy to do handle without treatment.

Wishing you all the luck in the world.

I’m positive that I have it. Every symptom, I have. Even positive on one of the serums. But because I’m not positive for both, they say that I don’t have it. I discussed it again with my rheumatologist and told him that I am on prescription eye drops. Because the drops help some and the dang papers he put in my eyes alone made them water, he said I don’t have it.

@saffronsass Thank you appreciate your input

@lisa930
You probably have it
My Dr said no but dry skin
My eyes horrible
At night be careful
With the eyes. Mine actually hurt at night cane to the point where I had pain and hard to open do dry
I now use ointment Systane
At bedtime and if your eyes are shut like that don’t force them open gradually put drops In the corner of the eyes the cornea can tear or get very damaged
This is a challenging disease
Drs are not always right.
Now I have a question has anyone tried Ozempic?
Apparently good for Sjorgrens with certain health conditions I am not a candidate because I react
To a lot of meds but you never know I might try the injection keep your chin up
😀we will all become experts at this disease

A Rheumtologist treats Sjogrens Disease. (They just changed it to "disease' because of the patients who felt it wasn't taken seriously as sjogrens syndrome.)

I have seronegative Sjogrens and was diagnosed because of symptoms over time, like what you've been through. It is the most expensive out-of-pocket "hobby" I have!
Biotene everything: toothpaste, gel, spray, gum. Can't live without it.
Eye drops: I was prescribed Restasis and it's helped me cut down on the amount of Refresh drops I usually go through.
Being careful what and where I eat. I tend to choke with dry mouth/throat.
Tomato sauce, anything acidic burns my mouth.
I never eat anything without something to drink.
And all of this comes to mind because I've been doing it for over 30 years!

I was told by a Rheumotologist that the definitive test for Sjogrens is a lip biopsy by an oral surgeon.

@benthedog the lip biopsy can be negative in more than 30% of active Sjogren's patients according to the latest peer reviewed report sponsored by the Sjogren's Foundation. It's got the latest clinical treatment recommendations and was created by a panel of the most highly regarded experts in the field. You can find it through the SF website. Most rheumatologists haven't seen it yet.

Ent doctor biopsies the glands inyour mouth.
Eye doctor ran two eye test confirmed Sjogrens.
My blood tested positive six months later.

@lynda12345 I have had Sjögren’s ‘s so intense that I had to have two eye surgeries to remove thick growths due to severely dry eyes. I have had hand and finger pain just like RA. I took 3000 mg of Tylenol just to get by. I finally discovered flaxseed oil capsules-I get them at Costco-1200 mg. I take 2 per day. Now my inflammation is totally gone and I take no Tylenol! I am in remission but still need to use systane eye drops and eat slowly due to dryness. I also removed a gold bridge that had mercury underneath (amalgsm). 5 months later -still taking the flaxseed oil capsules, I awoke without pain!!!!