A series of blood tests say sjogrens, and the you suddenly go sero negative

[Confused]

It has been an extremely rotten day.  I had a series of sjogren's panels run when I first was dxed with sjogrens and possibly connective disorder.  I saw about 3 different Rheumys at this time and they all said sjogrens and possibly connective tissue disorder. I wound up at a a good hospital and figured if I hit something major I could get into to see someone.  The Rheumy I saw said Sicca and sjogrens even though the blood tests at that hospital came out sero negative.  My blood work was no problem until the Rheumy left and the new one I wound up with said the blood tests I took were not good as only the ones from her hospital were ok.  I checked with several top doctors, with one being the top hematologist from the Cancer Center, as my blood work from an MRI was off and the Rheumy was think Leukemia.   All the docs I saw said the lab I had used that showed the sjogren's were true as well as a blood test that I had from a Rheumy who ran his own checks.  I was told that often the hospital I am using will insist their hospital blood work is the best as it is a rule by the hospital.
So, is this normal??  I assumed that after having a lot of blood tests that that would prove sjogren's I have it especially the labs that were used were ok ed by different doctors.
What I did get today  I have Spine degeneration.  Anyone have that?  There is more but any answers from this questions would be helpful.
Thank you

[Joe S.]

Sounds like my first attempts at a Dx. I got tired of all the tests and retests so I pushed for a Dx on symptoms. Sicca Sjogren's was the response. I presented dry eyes, dry nose, dry mouth, dry skin, and dry bum.

My rheumy journey started with a moth rash on my face once. I have not had that rash since. I have been told by eye doctor, neuro, dentist that they thought sjorgen's. So that is what I have gone with. 

[Carolina]

Dear Confused,

I've been reading this forum for 10 years, and have noted that there can be variability in the results of blood work for Sjogren's.

The key is to treat the Symptoms, regardless of the results of the blood work.

We all know how frustrating and confusing when we are told 'yes' and then 'no' and then various doctors say confusing things.

I have found that seeking treatment at a major University Medical Center is likely (not guaranteed) to provide you with the highest quality of care.

Regards,  Elaine

[irish]

I had many symptoms for 30 years prior to having appositive lip biopsy. I did not have positive blood work until after the lip biopsy. I have been diagnosed since 2003 with Sjogrens and in 2005 Had the positive blood work. Since then I have become serum negative again. I only have blood work every 2 years or so. The blood work can change back and forth and is very hard to catch.

Even when you have symptoms, which should be treated symptomatically even without positive blood work, the blood work can be done periodically. I know some people have it done every 3 months or so but I am of the opinion that is really a little often. Blood work costs money and having the blood work done every 6 months when looking for diagnostic results, seems like it would be often enough.

My immunologist doesn't do a lot of blood work, Because I had the positive blood work and have a diagnosis he does it every 2 years or so. His theory is that once diagnosed it doesn't make any difference if you are positive or negative as the treatment is done symptomatically not because of the blood work.

It should be noted that there are some people with autoimmune diseases who never have positive blood work and there are people with positive blood work all the time who have no symptoms. Please do not put pressure on yourself over the blood work. If you are not being treated symptomatically you nened to find a doctor who will treat you by symptoms so that your quality of life is better. Good luck. irish

[happylife]

Totally agree with you Irish.

I read one research paper with long term follow-up on neuro-sjogren. It found that 80% were seronegative at diagnosis !!!!!

I have forgotten the link to that research paper, if any one of you come across this please share it.

I have neuro-sjogren and not surprisingly i am seronegative.

Happylife.

[Deb 27]

Confused, some of my blood work went negative. It was never super impressive anyway but they felt I did have something auto immune and put me on plaque nil and prednisone. It was after a year that my ANA went negative.

It's a good idea to get a copy of your blood work. Then you can look things up for yourself.  A lot of blood work will peak and valley depending.

It took a lip biopsy for me to get diagnosed. I've gotten different diagnoses by different doctors. It really bothered me the first few years but it no longer worries me. Auto immune diseases can be very confusing and the diseases and symptoms can overlap. What's important is that they treat you and get you feeling better!!!!

[Judie P]

 It has been four years since I had the SSA and SSB done.  I don't think they plan on doing it again for me.  My SSA was off the charts.  However, my eyes and mouth are considered "mild".  It is my digestive system and nose that go dry and cause problems.  However, I have noticed that my rheumy and general practitioner don't even bother to look at my tests from four years ago.  So the last time I saw my rheumy, she felt my SJS was pretty mild since my mouth and eyes were not that bad.  I agree with everyone else.  I can see how SJS can cause variations in blood work as well as symptoms.  This whole disease is weird.

[irish]

It took me decades to become sero positive and I had had a positive lip biopsy which blew all me doctors away cause they didn't think I had an autoimmune disease. They have all changed their tune since then because I have had 4 more diagnoses of autoimmune diseases since them.

The interesting thing is that I have mild dryness of eyes and it was the last symptom that I got practically. Also, my oral dryness wasn't terrible but yet my teeth went to pot and I now have dentures. I have GERD, decreased pancreatic enymes, neuropathy in hands and feet and shooting neuro pain in many places but not all at the same times. I have a lot of problems with lymph tissue in my throat and nose swelling up and then decreasing plus the spasms in my salivary ducts and glands. The aching of muscles is from the Sjogrens and like others I have the osteoarthritis in my hands and feet. My tendons all over my body get inflammed at times and after awhile you sort of learn to identify these aches and know that they will come and go.

Like you said it is hard to sort all these ailments out, especially if you have more than one autoimmune disease. The Plaquenil does help with the chronic fatigue and helps to keep the aching at bay. We all have to advocate for ourselves and keep a couple of doctors in the wings to help us out. Good luck. Irish

[Confused]

Irish, thanks,

You have to have the patience of a Saint to deal with obnoxious docs.  Thank you for answering and thank everyone else.  My hubby knew I wanted my original Rheumy who had gone for awhile to study another field she is involved in.  My hubby realized she was now practicing again, though not as much as she still has the other area which I also need help in so I was thinking it was a win win until I realized my hubby rather had to make a point to get me my doc.

So you know what that means.  I have one mad Rheumy who somehow became the top Rheumy because of doctor switching and now my good Rheumy has to be very careful.  I have a ton of positive blood work but have turned sero negative.  The Rheumy I like will still see me and I have to find a way to talk with her with out being recorded.  She is really great and thinks out of the box.  But for right now she obviously was hit hard by the doc. that my hubby now knows you have to be very careful when trying to switch doctors.  No wonder we have trouble.  Ego's come first with some doctors but there are some pretty good doctors here so hopefully I will get things settled down.  I wish I had medical knowledge.
Thanks again

[SjoGirl]

Oh Confused, your group name says it all, we are often left confused by the healthcare community.

FYI blood work can vary from time to time, mine has swung from positive to negative and back again like a child on a swing. What has helped with diagnosis and treatment were other tests such as:

MRIs -- gave evidence of the significant degeneration of my spine, which runs from the top to the bottom.

Xrays and ultra sound -- This is how my current rheumy came to diagnose me with RA. My RF factor has always been negative, but as I was in the ultra sound room the technician and then the radiologist both asked if I was being treated for RA based on my results. I was not, but I am now.

EMG -- If you have nerve pain or think you have neuropathy this is the way to confirm. It's terrible, like being poked with a cattle prod, but it does provide a picture that is impossible to refute.

[irish]

Confused,  You have every right to change doctors or to see one for a second opinion. The insurance com pay can get involved when it comes to payment at times but sometimes when we are desperate we do end up paying out of pocket to help our peace of mind. Also, if we have positive blood wool that changes to negative www still have the diagnosis. That is what my immunologist says. He says our blood work can vary back and forth, but if we have a positive blood work associated with Sjogrens and are diagnosed with Sjogrens we are still a Sjoggie even when the blood work converts to negative. My immunologist says he treats symptoms, not blood work. The positive blood work, if even fleeting blood work, only helps toy substantiate the symptoms.

Sometimes we can get so overwhelmed with the task of getting diagnosed or getting treatment for our symptoms that we have to take a vacation from the process of searching out doctors, etc.  It is so exhausting going over and over the same story of ill health again and again. A little time off (which often can only be done with a shorter term of prednisone or a pain medication) is often a time of rest and reflection. Above all, it is necessary to have a good family physician. I finally found mine about 6 years ago and I will soon lose her as she is taking some years off to stay home with her kids. I am so sad cause I could always depend on her to help me sort out things and watch my back. If she thought I was a little crazy at times she kept it to herself.

Good luck and keep the faith as you pursue help. It can take too long sometimes, but when you finally find it well worth the trip. Irish