Equivocal Sjogren's Reading

[neenagokli]

Hi All,
In January, I was diagnosed with equivocal Sjogrens. All of my bloodwork came back negative except for an equivocal (borderline) reading of the ss-b antibody. Because of my dry eyes (I had laser eye surgery which added to my dryness about 2 years ago. Luckily, with the use of Restasis and plugs, my eyes feel better), my Rheumatologist and Opthamologist have diagnosed me with Sjogrens. My Primary Care physician nor dentist don't think I have it. Besides dry eye and occassional rashes from the sun, I have no other symptoms. My Rheumatologist told me not to 'lose sleep' over the diagnosis but I am scared as to what my life could become. I am only 32 years old. Has anyone ever received an equivocal diagnosis and if so, has the diagnosis ever become positive? Thanks.

[Joe S.]

Welcome to the forum. Finding what management techniques work for you are your best options.

[Pisces24]

Sjogrens affects everyone differently. They say it is progressive but the rate or progression is different too.

I tested very high for ANA, SS-A and SS-B and my symptoms are:  dry eyes (otc eyedrops work), dry mouth (biotene helps), lotsa teeth cavaties (still trying to help that) , had numerous sinus/throat infections (sinus flushing has cut waaaay down on # and severity of) ,some fatigue (but I usually feel it coming on and can avert a crash) and I have a few spotson my lungs the pulmonologist is watching (no breathing probs, etc.)  So all in all, my symptoms are mild and I've had these for 10-15 yrs now.

My advise is just to enjoy your life and deal with SJS when you have to. Sounds like you are still going through the acceptance stage yet - when you get through that you'll have a better mindset to deal with it. I had one dr tell me my SJS was "some type of cancer" and I agonized for 3 mos with my life on emotional hold due to that. I got through the acceptance phase pretty quick.  You just at some point decide you are just going to live yoru life and deal with issues as they come up instead of agonizing about what "might" come up. Good Luck!

[Patze]

Hi Neenagokii,

Let me also welcome you to the SJS World and family!  Please do look around the board as there are scads of topics that you might find interesting by using the search engine located in the upper left hand side of this page.  If you don't find what your interested in, don't be shy and ask away as there is usually someone about that might be able to help.

Like Pisces mentioned, Sjogren's is so individual that no one can tell you what will happen down the road.  There are members here that have never had any symptoms of SJS, but their blood work is very positive.  While others have never had positive blood work and have a ton of symptoms, and unfortunately there is no rhyme or reason to Sjogren's.

I'm glad that your rheumy is taking you seriously, and thats half the battle with SJS (there are a lot of members that it took several years to get a diagnosis (some even decades)).

You're in a good group of 30 somethings, plus there are several 20 somethings, and some teens as well (the youngest here is about five now). 

Hang in there, okay? 

Patze

[neenagokli]

Thank you, everyone, for your feedback.

[irish]

AS the old saying goes, "don't borrow trouble". If that is the only symptom that you have just fo with the flow. Make sure that you get the treatment you have and don't worry about it. I had sjogrens for about 40 years before I even got diagosed. I didn't know I was sick so I just did the best I could. Live was hard at times, but I made it.

The human spirit is very strong and most of us can cope with what is handed us. Where there is a will there is a way as they say. Enjoy life. Irish

[shortstuff]

I'm going to guess my Sjogren's is equivocal.  My SSB was 1.1 on a test where >1.0 is positive.  My rheumatologist immediately put me on Plaquenil.  I have had bad dry eyes for about 8 years.  As far as Sjogren's goes, I think this is my only symptom so far.  I think my mouth is a bit dry and I have gotten more episodes of sinusitus and annoying dry throat during the winter over the last few years but as of now no major joint problems.  I'm tired a lot but not sure if that's disease or that fact that I have two kids.  I went to get a second opinion in March and that doctor retested me and my SSB was negative.  However, I was taking Plaquenil at the time so I honestly don't know what to believe.  But she said I should discontinue and count on my opthalmologist solely for future care.  She looked at my eyes and mouth and she said they weren't bad.  However, she has no idea how my eyes feel.  For now I'm still taking the Plaquenil.  Restasis somewhat helps my eyes but they hurt every day.

I'm 35, have 2 young children and I'll be damed if I do have SjS if it's going to take me down without a fight.  I live my life as normally as I can in spite of the discomfort because who knows what the future holds!

[eyeamdry]

Hi Neena, I can't tell exactly if you thought you had Sjogrens or not when you had "laser eye surgery."  I had Lasik eye surgery 11 years ago and have regretted it ever since.  My eyes went to immediately desert dry and my vision has never been as good as it should have been afterward.

I run into people quite often on here thinking of having surgery because their eyes are too dry for contacts and they don't want to wear glasses, so they look at Lasik, PRK etc.  If a person's eyes are too dry for contact lens, they should not have refractive surgery.  If you look long enough, a doctor will do it as it is a big cash cow for them.  There is little ethics in that medical field since the "miracle" has become so available.  Sorry for running on.

I was dealing with dry eyes, bad vision and sometime in the years following, I got SJS.  All that does is make everything worse.  If I had not had Lasik, my eyes would still be dry, although not painfully so and my vision would not be ruined.  Lucy

[neenagokli]

Shortstuff, your words inspire me to live my life to the fullest. Thank you. Eyeamdry, I had PRK before I was diagnosed. I am grateful to be able to see clearly but regret the dryness that came with the surgery.

[susanep]

Welcome to the board. You will find a lot of information and caring people here.

susanep