Hi There,

By itself, a positive ANA test does not indicate the presence of an autoimmune disease or the need for therapy.

Lots of Dr's disagree about how to DX Sjogren's. The bloodwork is not always reliable...some people's ANA tests positive but show no other signs of a Connective Tissue Disease, and other people's ANA test's Negative, but they have other markers like Dry Eye that has been measured using a Schirmers Test, Dry Mouth confirmed by a Lip Biopsy.

Sjogren's is hard to diagnose and every Dr has their own opinion. In my case, my ANA was speckled, but before my Rheumy could do further blood tests, I started receiving Infusions of Donor Plasma (IVIG) so my results will never be reliable.

So, my Rheumy has been carefully monitoring the subjective symptoms that accompany Sjogren's...I had the horrible joint pain in my hips and knees (Plaquenil worked for me), a previous opthamologist from over a year ago noted corneal damage common with Dry Eye, so she ordered the Schirmer's test, and as time went on my Dry mouth became worse, so the Lip Biopsy was performed.

Since Sjogren's is progressive,I have been having cognitive issues and an MRI and Neuro-Psych exam have been ordered.

My Rheumy was slow to concretely say "You have Sjogren's" because the symptoms mimic so many other diseases, but she never closed the door on the DX, as new symptoms popped up she ordered the appropriate tests, and as time goes by, she feels it is very likely that I do in fact have Sjogren's.

I think, my advice to you, is to just stick with the Dr that you feel comfortable with. If the Dr you like does not want to do the bloodwork, but is addressing your subjective symptoms so you feel less pain and discomfort, does it really matter if you call it sjogren's or not? The goal is to feel better, and it seems your Dr is RXing all the right treatments for you to do just that.

Best, LuLu

I have a situation very similar to yours. My blood tests have been negative, but I have most of the symptoms of SS. My dry eyes are so bad that I've had corneal surgery in the past for ulceration. My nose and mouth are also dry and I have been developing some peripheral neuropathy. Don't let these doctors make you feel crazy. There are always some people out there who will think you shouldn't be having problems if their tests don't show a marker. My husband is a physician and he says that many doctors rely too much on objective tests and that a good one will talk to the patient and rely on diagnostic skills to come to a conclusion that makes sense.

Hey Emily

Your husband is very right...auto immune diseases are so hard to DX, that a good Rheumy will not rely on bloodwork alone, but will take into account both the subjective and objective test results and then weigh them both-A good Rheumy also knows that blood work is not always reliable for Auto Immune issues and keeps a close eye on the subjective symptoms...a lot of times Rheumys will give a sort of tentative DX b/c as the subjective changes they learn new things about the DX, and how the DX is progressing, which is good, because you don't want a Dr to close the door on progressive illnesses that mimic each other and possibly miss a treatment that could help you.

Thank you both so much for your input. I really needed to hear what you had to say. Martha

Hi Martha, I hope it is not too late to reply to your message. I have had severe Sjogren's symptoms for almost five years, on top of 31 years of "fibromyalgia" and "Chronic Fatigue Syndrome" and what-have you. During all this time I have been seronegative. I have had two rheumatologists tell me me I do not have Sjogren's, and two tell me that I DO have Sjogren's. Plaquenil made me sick as well, and I can't tolerate Evoxac or Lyrica. I do tolerate Restasis, which helps somewhat. I have found all the rheumatologists to be less than helpful - they act as if I am complaining about nothing, and you can see their eyes glaze over. They can find nothing on paper that is "wrong" with me, and the implicit message is that I'm a hypochondiac or a spoiled woman looking for attention.

But, the plot thickens. I am starting to doubt that those of us who are seronegative actually have Sjogren's. First, I started taking iodine to address some microcalcifications that were found on a mammogram. To my utter surprise, I got slightly more energy, my body temperature crept up close to normal, and I have about 50% more saliva. Yesterday I went to see a new doctor - a functional medicine doctor who previously was an oncologist for quite a while. She looked at the labs I brought and said that I was profoundly hypothyroid, as my ratios were terribly off. I should note that the endocrinologist said that he pays no attention to the ratios, only the TSH, which he did not want to treat. The reason the iodine helps is that most people in the US are iodine deficient, and the little bit of my thyroid that works was desperate for it. When you are hypothyroid, you get all the sicca symptoms. The other shocker was that after listening to my history and all my Sjogren's symptoms, she said that it's possible I have had a type of severe mold illness for a very long time. This is not an allergy - it requires a certain set of genes in order to be susceptible to this - but the symptoms mimic autoimmune diseases, and the dryness, fatigue, joint and body pains, brain fog, and peripheral neuropathy of Sjogren's. The mold finds its way up your sinuses and goes to your hypothalamus, where it does the damage. The hypothalamus is sort of the master controller of bodily functions - everything from thyroid to digestion, cognition, nervous system, reflexes, pain, you name it. So, yesterday I had 13 vials of blood drawn (and all these tests are available at Labcorp and insurance pays for it). The downside is that your body cannot heal from this on its own, but the upside is that with treatment people get completely or mostly better. Of course if you have the genes you have to get your house tested and remediated if need be, since you can easily be reinfected. Go to www.survivingmold.com and see if any of this sounds like you....click on "diagnosis" and go to "biotoxin pathway". I also asked the new doc "what if I don't have the genes for this" and she said that for most people who come up negative, they usually end up having chronic Lyme disease, detected only by very advanced testing, not by tests that your PCP would do, like the Western Blot.

So, I tell you this so that you might not get stuck in that hopeless place of being seriously, profoundly ill, and yet dismissed and treated badly by the traditional rheumatologists. It might actually be something else. Don't be a "good girl" and always kowtow to their judgment. Think outside the box, and be your own best advocate. Don't give up doing your research- always keeping your mind open while also being a skeptic. You might also want to go to www.functionalmedicine.org and see if there are any in your area - they look for root causes of disease and address that, not just symptoms. They often don't take insurance, so start saving your pennies.

I hope this helps - if not, just pay no attention ;)

Feel better,
Dale

P.S. I'm a girl

Fordhammsw,
Thank you for the great information; very interesting.
Please keep us posted on results for that recent blood draw.

Hi Debs,

I will! The doctor said these labs can take weeks, though, so it won't be soon.

Dale

The only blood test that I had that wasn't normal was a sed rate or ESR which is an inflammation indicator. My specific sjogren's tests were negative. My rheumatologist referred me to an ENT for a lip biopsy and that confirmed that I have Sjogren's, they take a salivary gland out of your inner lip- it's pretty easy surgery, mine was done in surgery as an oupatient. It is nice to have that confirmation since so many people don't believe we are really sick by looking at us!

Dear Berryfestus, I too have no markers though I am on meds that will askew the markers showing up. My Rheumy is "awsome" I wish you could find someone like him(I am in Boston MA)
Yes though on blood markers for CRP and ESR which were extremely high 30's and 60's when I had a bad RA flair so I do show some traits, I showed in the Schirmer test for DryEyes, and the Salivary gland test (if diagnosed you Wont need that test, its a lond needle through the jaw to injest die into salivary gland.

Please have the Unversity doctor that showed compassion and skill refer you to a Better Rheumy. My Rheumys great as he understands why Im so angry I have Sjogrens & RA, it has put me in my place and "slowed" my type A drive down.

I wish/pray this finds you in better spirits
Terry

Having a very rough day, and didn't read previous responses - so sorry if this is a repeat:

You only have to test positive for 4 out of 6 markers to be dx'd with primary sjorgren's.

And, most specialists don't test for the SS-A and SS-B anti-bodies, so your doc is correct. They fluctuate and may not show up on blood tests.

Here's the criteria:

http://www.hopkinssjogrens.org/disease-information/diagnosis-sjogrens-syndrome/americaneuropean-consensus-criteria-sjgrens-syndrome/

I had I, II, III, IV, and V (the +ANA, the tear dissipation test = failed, swollen salivary glands, dry mouth, dry eyes, lip biopsy etc).

I didn't have the blood test done for the exact reason your doctor stated.

Dale,

"She looked at the labs I brought and said that I was profoundly hypothyroid, as my ratios were terribly off. I should note that the endocrinologist said that he pays no attention to the ratios, only the TSH, which he did not want to treat"

I also have hypothyroidism. I should tell you that the TSH test is the bane of every hypothyroid patient's existence!!!!! Ditch the endo-criminnologis - they are the WORST at treating hypothyroidism. Have your doctor rx you medication for your thryoid - it is, after all, the master controller of the body. Sounds like you found a doctor that actually tested your Free T3 and Free T4 levels which is where hypothyroidism should START being treated. Please get some meds fast - because severe hypothyroidism can lead to all sorts of nasty business - including death.

Hi Madame B,

Thanks for reading. I am well aware of the issues the endocrinologists, having found the "Stop the Thyroid Madness" and then buying Mary Shoman's book. I went to the endo only because I had to wait over three months with the functional medicine doctor, and I was actually quite desperate. I had little hope that he would prescribe either natural thyroid or T3, but I had read that sometimes T4 helps in the very beginning, and a little later ends up being useless or worse. I was willing to try a low dose for a couple of weeks to tide me over. A couple of doses was all I could tolerate. The functional medicine doctor put me on T3. However, the jury is out as to whether I actually have permanent hypothyroidism - there's a lot of other stuff going on with me that can affect the thyroid that I am about to start treatment for. It's a long story, and pretty soon (when I know how the treatment is going) I will write about it (the genetic issue that causes mold illness) since it may have implications for people on this site who are sero-negative. Meanwhile, thanks for noticing and caring!

Dale

P.S. Sorry for all left-out words and mistakes in my reply. I have cognitive issues that I am fervently hoping will be resolved. And it's still relatively early in the morning.....;)

If Venus Williams took a few years to get diagnosed you think its easy to detect. She has resources nobody here does.
I highly recommend a new book out written by Betty Collier -name of the book SHOW-grins.
Some shocking new information in it too.
One that really stood out is fatigue and why SjS patients are so fatigued. The answer is simple we need more oxygen than normal folks we use more.
Get the book especially females here- its written more for women by women than for men but Its still informative and eye opening.

Hi Tom59,

Thanks for jumping in :)

I had no idea Venus Williams had Sjogrens...interesting.
I will definitely take a look into the book and also the idea of needing more oxygen.
I have several DX's all of which can cause fatigue, and after a 2 day sleep study with no abnormalities, have been DX'd with Hyper-Somnia...always looking for something that will help reduce the need for sleep or not being able to control when I fall asleep.
Thanks for the info!
LuLu