is there such a thing as zero negative Sjogren’s?

I think you mean seronegative Sjogren’s.

Yes there is such a thing:

Yes, thank you. I meant seronegative. Thank you for the link.

It is more common than you think, something like 20-25%
I started out that way
If you google the "Sjogrens Foundation" and "Sjogren's Advocate" there are articles on it.

Thank you!

In 2007 I developed a myriad of symptoms over a couple of weeks. Firstly peripheral neuropathy, then balance problems, nausea, fasciculations, severe joint pains, extreme fatigue, a never ending cough and many other symptoms (I’d need to refer to my notes from that time).

At that time I was tested for Sjögren’s Syndrome but was negative. The next few months went by during which time the nausea developed into full blown Gastroparesis (paralysed GI tract, proven with GES Gastric Emptying Scintigraphy) and Intestinal Dysmotility. The lungs - Bronchiectasis (HRCT). The balance problems continued and I also developed rapid heartrate on minimal walking which was diagnosed as POTS.

So I was at least fortunate that testing uncovered an unequivocal ‘diagnosis’ for all these individual symptoms (with subsequent treatment and therefore a measure of relief) without exposing the ROOT CAUSE as to why all these ‘symptoms’ were happening concurrently. Of course in my case the ROOT CAUSE was Sjögren’s but because I was SERONEGATIVE it was not recognised as such.

Fast forward to 2015 I finally marched into my GP’s clinic and asked to be tested for Sjögren’s autoantibodies (ANA’s, Anti Ro’s, Anti La’s etc etc). A few days later I was called in to be told that all the results pointed to Sjögren’s (surprise, surprise) and so then I was referred to a Rheumatologist.

It was not until I had that positive result for Sjögren’s autoantibodies did I feel that I was believed by the medical fraternity, seeing that most of them thought ‘dry eyes and dry mouth’ was the extent of Sjögren’s Syndrome).

Since then I’m doing ok. Dry eyes and dry mouth eventually entered the fray but they have never been really as severe as the dysautonomia symptoms.

May I ask, what medication’s were you prescribed for your Sjogrens?

I have dry eyes, nose, mouth, skin. I am dizzy and my hearing is distorted with tinnitus and hyperacusis. I have tested negative three times for Sjogrens. Since having Covid, all these issues are much worse. I do not have pain, except for gritty uncomfortable, light sensitive eyes.
I do wonder if I have not yet had the right test.

I developed several autoimmune diseases from Covid/vaccine (my body created antibodies that turned against me), both antiphospholipid syndrome (clotting disorder) in Fall 2021 and Sjogren's May 2023. My onset of severe symptoms (muscle weakness, debilitating joint pain, brain fog, etc) didn't have me seeking answers until early 2023, but had antibody testing done with a rheumatologist and got the Sjogren's diagnosis. Because I am on blood thinners with my antiphospholipid syndrome (had acute saddlebag PE and DVT in Oct 2021), my only option for meds for Sjogren's was hydroxychloroquine (Plaquenil). I will say, I began taking it in June 2023, and by mid July I saw a majority of my extreme symptoms and pain resolved. I can still get flares, but the meds were a game changer for me. For the first time in over a year I had a sense of normalcy. I also transitioned with the the meds to an anti inflammatory diet, which had great results for me even before I started to reap the benefits of the hydroxychloroquine at 6-12 wks.

Thank you so much for that information. We are hoping to get my sister on Plaquenil soon. It has been agonizing to watch her suffer from the effects of Sjogren's' over the past 2 years when the symptoms became more severe. I'm so glad you have found relief, and thank you for sharing your experience, and helping others find the same.
Sincerely,
Linda Kinzler

Like sarahm73 I was prescribed Plaquenil.

I had a period of time when the Rheumatologist put me on Methotrexate but I concluded that it wasn’t that effective for me so I went back onto Plaquenil, which I still take.

The other meds which really helped me most before I started Plaquenil were, Lyrica (Pregabalin) for the neuropathy, Propranolol for the POTS (postural orthostatic tachycardia syndrome) and Domperidone/Motilium for the paralysed GI tract and gastroparesis. I am still taking all these meds specifically plus a few others for pain and lung issues.