Any one with ssa, ssb and ana negative sjogren?

[happylife]

Also please confirm if you have neurological involvement?

And the status of lip biopsy.

[Joe S.]

Blood work can always change. I am sero-negative. I have not had a lip biopsy as they are not acurate and often cause more problems. I was finally diagnosed on symptoms after years of tests. 

[happylife]

You are right Joe

I also find this research paper which says 80% of neuro sjogren patients are sero negative !

https://www.ncbi.nlm.nih.gov/m/pubmed/15342972/

I am sero negative and i already have atypicalface pain.

Looks like you too have neuro-sjogren.

[Joe S.]

I try not to think of the neuro effects. I was Dx'd with Pre "something" dementia as a way to explain the neuro muscular complications. This diagnosis came in before the Sjogren's and after the second Fibromyalgia Dx. About the same time I was Dx'd with severe Arthritis in my hands and feet. I have been Dx'd with diabetes in 1984 before any other Dx's.

I spent years donating blood. Since I am o+ and missing most of the rejections factors, I got called almost every time their was a a transplant operation at one of the local hospitals. I made 8 gallons before I had to quit. 

[Intelife]

Hello all.  I am a newbie on this site, and after searching through tons of messages from 2012 thru 2016, I was about ready to give up.  It looked as though this site was shut down.  But now I found these recent posts from TODAY!!

So, I am here to learn all I can.  After a lifetime of poor health and classic CFIDS symptoms, I went through four years of horrible pneumoni, Valley Fever and Shingles.  During that time I had the extreme dry mouth and eyes which both I and ALL my doctors and specialists IGNORED.

Finally in August 2018  ( after four months of reading every research paper I could find), I CONVINCED my PCP that this is SjS and he agreed with me.
SERONEGATIVE??? Yes, on everything including the Bausch and Lomb early biomarkers tests.

DRY! SICK, SORE, FATIGUED..also YES.   

So currently titration up from .5 to 2 mg LDN and playing around with CBD gummies, capsules etc.

Have  tried a lot of other things with no effects...so that's the journey for me right now, October 2018.

Wondering if the chat groups or other resources are still active or if anyone is planning to attend the LDN conference in PORTLAND in June???

[irish]

There is a ton of discussions on this site about seronegative Sjogrens....which is not that uncommon. If you go to the search above you can put a line is of words that will bring up many discussion. Try using just the seronegative Sjogrens and I bet you will get a lot of info. Many of us have had experience with it. Many people stay seronegative and others stay seropositive and many convert back and forth between the two.

Also, the lip biopsy is nice to have positive but many times they turn up negative but the person still has Sjogrens. I have been reading that they are depending less on the lips biopsy. PLus there are new blood work out that makes the Sjogrens diagnosis. I don't remember the name of it but somebody will show up with the answer. Good luck. Irish

[rnathans]

I am seronegative with neuro involvement.

[Maria3667]

Blood work can always change. I am sero-negative. I have not had a lip biopsy as they are not acurate and often cause more problems. I was finally diagnosed on symptoms after years of tests.

My words exactly!