sero negative sjogrens?

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!

@jw9 I to have the negative one. Dry mouth ,eyes, skin everything. Also burning mouth syndrome. I use magic mouthwash for that. Have to get from a Dr. Thanks for the post bc I thought I was by myself in this situation. Have a blessed day

@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!!!! 😀😀😀

@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.

@seronegative49
I consider autoimmune diagnosis to be very "slippery," meaning it won't stay in the box. Just like our symptoms are usually always in flux, it depends on who you see and when you see them what will be apparent for a diagnosis. It's why we have to keep seeing new doctors hoping for answers. It's why I went for almost 20 years before getting a diagnosis of seronegative RA. And now, 15 years later it looks like I really have Psoriatic Arthritis!? Changing autoimmune, autoimmune in flux.

A friend saw the rashes on my forearms and asked me if they know what I'm allergic to? I told him, I'm allergic to myself! It's autoimmune!

@jw9 I agree with you - "slippery" is a great description. 40 years ago my diagnosis was fibromyalgia. 10 years later it was seronegative Sjogren's, then 15 years ago MCTD, now back to Sjogren's but with Lupus markers showing up. And of course the psychologizing along the way delayed any serious efforts at appropriate treatment. We are still in the dark ages of understanding autoimmunity. But getting better, I hope.

@lynda12345
Great attitude we just need to teach health care workers and Drs how debilitating this Disease is. When I tell the Dr and they don’t know so it is up to us to educate them. The Lozide eye drop I just tried does not work makes everything worse 🙁
I read Metformen and Ozempic could help with our symptoms. I am currently trying Ozempic
Fingers crossed 😀

@lynda12345
Do you mean symptoms of diabetes?
Metformen is for diabetes and Ozempic I don't understand, except currently it's being marketed for everything.

@mariesa1
I cannot count how many times I have written "thought I was by myself" or read it in autoimmune chats! I'm grateful to everyone who reaches out and posts! Thanks for your comment.
I had to look up magic mouthwash as I've never heard of it. I'm so glad you found something that helps. One of the names is "Miracle Mouthwash"! It's good your doctor helps with burning mouth syndrome because of the pain. Once (and I was an RN) I somehow took antibiotics wrong; instead of 2X day I took 1 pill for a longer time. OUCH! I ended up with a burning tongue that took a month to go away. Now I know I was lucky it even went away.

@jw9 I agree with you - "slippery" is a great description. 40 years ago my diagnosis was fibromyalgia. 10 years later it was seronegative Sjogren's, then 15 years ago MCTD, now back to Sjogren's but with Lupus markers showing up. And of course the psychologizing along the way delayed any serious efforts at appropriate treatment. We are still in the dark ages of understanding autoimmunity. But getting better, I hope.