The Serum Negative Crowd

[Nathan]

I had a few questions for the serum negative crowd.
Were you officially diagnosed with SjS? If so, was it based solely on exclusion? Did your blood ever become positive at a later date? How long did it take to be diagnosed?

Sorry I have so many questions, but I'm sort of in limbo myself. All my blood work has been negative, and I'm waiting another two months to see my rheumy again to see where I go from here.

[Skylar]

Hi Nathan, I'm sero-negative for Sjogren's - approximately 30% are. I had other significant markers showing inflammation along with symptoms like extremely dry eyes, dry mouth with a red line on my gums due to dryness etc. I also had a history in the recent past where they thought I had MS but couldn't quite make a definitive diagnosis. So I was sero-negative, but a lot of supporting factors for a diagnosis - and no lip biopsy required.

Skylar

[tuckerdog]

I have been dx'd for 2 years.  I had symtpoms for at least 15.  The shirmers test and the lip biopsy positive for me is what made the DX. 

Tucker

[Patze]

Hi Nathan,

I am part of the sero negative crowd here and I still am diagnosed as SICCA and not SJS.  Eh, the doctor is treating me so I'm not complaining (much ). 

Like Skylar, my eyes are very dry (totally clogged oil glands in the eye lashes is causing all of my eye problems).  I also have a slightly elevated SED rate of 31 (from a high of 60); but, the rheumy flipped/flopped on the diagnoses a lot the first couple of years, but thankfully he is now sticking with SICCA.

Take care -

Patze

[salsen]

Count me in.  I was diagnosed by symptoms only about six to seven years ago by one rheumy.  A few years later my new rheumy recorded suspected SJS but would not take the next step since all my test continue to come back negative.  All that shows up is some sort of inflammation problem going on.  The Schrimer? eye test is borderline.   Still the dry eyes, dry mouth, fatigue, upset stomach, neuropathy, and restless sleep go on and on and on. 

Maybe SJS is normal for me  LOL. 

[Billydude]

Hi Nathan,  I'm sero-negative as well but I was confirmed via lip biopsy that turned out positive.   
Steve

[abner]

My ANA was negative.  The rheumy took one look at me and said that he would not bother to do any tests, as there was nothing else that could cause the extreme signs that i was displaying.  My mouth was bone dry, as were my sinuses.  My eyes were running with pus, but dry underneath.  My bronchial tubes were dry, although I was sick.  My sed rate is chronically elevated, and my CRP was a whopping 16.  He diagnosed me with SJS, and I do believe that I have it, but I recently had to stop Evoxac, and was surprised that my symptoms, though noticeable and requiring attention, are not anywhere near as painful and debilitating as they were a few years ago.  All I can think is that I was in a flare then and a remission now.

[navydad]

Man I would love nothing better then a remission right now,, I have never been in so much pain,, plaquinel isnt working yet,, Rheummy wants to try Lyrica,, so sick of taking meds,, and really sick of drinking water,, I cant say my mouth is dry all the time,, I must make some saliva,, but its not of very good quality,, and I was DX;e strictly on a lip biopsy that showed fibrosis,, not in flamattion,, pathologist asked on the report if there was any history of scelerdoma,,

[Billydude]

I'd love to be in remission too!   Summer is the worst time for me.   The CNS involvement is the kicker for me right now.   I have cranial neuropathy and feel like every movement is a jolt.  The other day it took two minutes for me to remember where I lived.   
Steve

[pudmott]

i am ANA positive but sjogren's -ve. i had positive schirmer's and dry mouth and arthritis symptoms. also major fatigue. my immunologist diagnosed on these symptoms. I've been in remission for about9 mnths but something tells me i might be in for a flare