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Anyone SSA AND SSB positive??

Started by puccini914, September 10, 2010, 05:42:01 PM

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lighthouse33

SSA and SSB Positive.  Don't know the lab values.  Postive RF.  Sun sensitive.  Arthritis and polyneuropathy due to Sjogren's.  The nurse told me at a recent appointment that they had thought from the beginning that I had Sjogren's.  It took around eight months for the bloodwork to come back positive. 
Female
Primary Sjogren's, polyneuropathy, endomitriosis, dietary fructose intolerance
Plaquenil, Lyrica, Tramadal, Omeprazole, Fortical, fish oil, flaxseed oil, benefiber, centrum chewable mulitviitamin, caltrate chewable 600 D+minerals, WSN Nerve Support Formula, Align, Biotene Products

PrincessLeah

I have pretty severe sicca syndrome, but test completely negative for everything.  (ANA, SSA/SSB, RF, etc.)  Negative lip biopsy too.

It was sudden (within a few hours).  Not sure how my glands completely destroyed themselves without any positive blood work or biopsy.

I'd definitely agree with the "bloodwork doesn't indicate severity" statement.

I've been having difficulty with the whole Sjogren's definition too.  I have all of the sicca symptoms, but nothing that shows up as why.  After reading the boards, I'm thinking there's another AI syndrome that some of us have -- sicca, but not caused by the destruction of the glands themselves.  Some form of neuropathy, maybe?  Perhaps some pioneering doctor will come up with a name for it.  Remember, people had Sjogren's, lupus, etc. LONG before someone named them.

PL

Pisces24

I am SS-A and SS-B positive. I got the specialist to give me the numbers.
They must all figure their numbers different or something?

ANA (normal <1:40) = mine 1:2560  (I heard the stop counting after 2560.)
SS-A (normal <19) = mine 280
SS-B (normal <19) = mine 206

When they first diagnosed me (March 2009) they said my numbers were quite high but I didn't realize HOW high!

I also have Hashimotos and I get Reynaurds in the winter on 2 fingers.

puccini914

Wow! Thanks for all the replies, everyone.  I was trying to see if there was any correlation between vertain symptoms and certain antibodies, but it seems like there just isn't any kind of pattern to these things at all.  My ANA was Speckles pattern if that makes any differnce.  I guess I've got my science geek hat on again desperately trying to figure out the mechanics of this darn thing.  I just wish there was a clearer picture of what makes this whole thing tick.  If the Big wigs with multiple degrees and billions in grants to spend in research can't figure anything out, then who am I sit here and try to think my through it all.  Thanks everyone.     Jenn

irish

Princess Leah, You do not know for sure that you don't have Sjogrens. Everyone of us are different. I had symptoms for years and dryness was not the one I noticed first. It was the aching muscles and joints and the balance issues. Many times a person can have some of the symptoms and not positive blood work and or lip biopsy and still have sjogrens.

Sometimes just waiting will give the beast a chance to show it colors. The dryness in my eyes was the last symptom that I got. Who knows what the future holds for this disease. When I had my lip biopsy it was ordered by my rheumatologist because I was having pain in the side of my face--turns out it was my glands. I had no idea cause there was no swelling.

Anyway, went to my ENT who is very good and he told me "there is no way that you have sjogrens" and I just said very loudly and firmly "do It"!!

You can imagine his surprise when he called me 3 days later and told me my biopsy was positive for sjogrens. You could have knocked him over with a feather. I didn't look that dry but yet my teeth were really bad and I had felt absolutely lousy for about 30 years at that point. I was in a flare the day I got married in 1964. So don't lose hope, there is more going on with your body,I would bet that doesn't show yet.Good luck. Irish ;D

lindaneall

I have a high ANA, SSA, SSB, Rheumatoid factor, Thyroid Antibodies, IgG, Smooth Muscle Antibody (highly suggestive of "autoimmune hepatitis").  In fact, during the abdominal ultrasound I had last week, the radiologist said I had a heterogenous liver and asked if I had hepatitis. I told him, "No", but my liver function tests are regularly followed due to the pos. Sm. Muscle antibody. Anyway, hope I don't have problems with my liver down the road. My rheumy said I have an "active" case of Sjs :(

As far as sun sensitivity, I do need to be careful to use sunscreen. But I am fair skinned and live in FL, so I would expect to need to be extra careful anyway. Oh, something strange did happen last month when I was at the beach. My husband pointed out that my fingers were red. Sure enough. They looked beet red....very strange. All returned to normal after I cooled off. I hadn't seen my hands do that before.

Blue Kat

I'm both SSA and SSB positive, but have been doing pretty good lately, which is one reason I haven't been on this board much...I tend to come here more when I'm having bad days.  I still hurt every day, but it's manageable for now, thankfully.