Sjogren's test negative, but....
 

I have been tested negative for Sjogren's. The test was taken before my peripheral neuropathy symptoms because of persistent dry eyes. I am using several eye solutions. All along I was confident that I dont have Sjogren's syndrome.

Until my neurologist casually mentioned that having a negative result does not mean that I dont actually have Sjogren's. Is this true?

I dont want to undergo the lip biopsy because of so many posts here that says how terrible the side effects are.

Sjogren's test negative, but....
 

What test did you have for Sjogren's that was negative? I have primary Sjogren's syndrome and was diagnosed with the lip biopsy. It is the gold standard for the diagnosis of Sjogren's. It was done by an ENT and it healed well with no complications.
Do you have joint pain along with the dry eye?
In some cases, I have heard that a doctor can diagnose Sjogren's syndrome by the symptoms of the patient.

My test was to see if I have autoimmune problems. I have osteoarthritis but no RA.

What test? There are many tests for AI diseases. Can you be more specific? Was it for SSA & SSB?

The lip biopsy is no big deal, really. There are some the get a very small area that is numb or has a lump. I have both but VERY small and certainly not worth complaining about. You are going to find people that have bad experiences with any test out there. Most don't have problems, but when you are reading online, you'll hear about the minority. Keep in mind that all those with good experiences are not going to post online just to say it was fine.

The lip biopsy is the definitive test. Up to 40-50% will be sero-negative for Sjogren's, so the biopsy is the way to go if you have other symptoms and want to confirm or deny Sjogren's. I have all negative blood work, but my lip biopsy clearly shows Sjogren's at end stage.

Have you had a Schirmer's test to determine if you tear production is abnormal?

The tests I had are:

1. Sjorgren's Anti-SS-A
2. Sjorgren's Anti-SS-B
3. Antichromatin Antibodies (not sure if this is related to Sjogren's)
Note: Results for all of these are <2 with reference interval (i guess this refers to normal ranges) as 0.0 - 0.9.

Please take note that when I had these tests, together with a whole bunch of antibodies tests, it was before the onset of my PN symptoms. I had a mass in my lacrimal gland. The opthalmologist poked it to get specimen for biopsy. It was benign (thank God), but after that poking and steroids (localized), I have now dry eyes.

I dont know about Schirmer's test, but everytime I go to my opthalmologist, there is this white strip clipped in my eyelids to test how dry my eyes are. Is this different from Schirmer's test?

If I may ask, what other symptoms do you have for Sjogren's? Did your PN symptoms manifest about the same time when you discovered about the Sjogren's?

Thank you.

I don't think 'when' you had the tests done will make that much of a difference, unless it was many months. Then you may ask for them to be rechecked...but don't be surprised if they are still negative, even if you have Sjogren's.

The Schirmer's test is a strip place just under the eyelid for 5 minutes to measure tear production. It sort of sounds like what you had done. But it doesn't sound as if they gave the you results. You may want to ask for the office notes from your visit to see his comments about this test...or whatever he did with the strip.

Of course, I have the typical dry eyes and mouth, but my neurological symptoms came very early in the process. I have numerous symptoms from Sjogren's...or from the neurological manifestation of it.

dry eyes & mouth
hoarseness
dry skin
gum disease and dental problems
iron deficiency anemia
joint pain
fatigue
PN pain(feet are the worst), but also neck and back and down back of legs
allodynia (both legs)
vibrations, and sensory loss in both legs
severe autonomic neuropathy (to include gastroparesis, balance, proprioception, BP, heart rate/arrhythmia, cardiac vasospasm, livedo reticularis)


You certainly don't have to have all these to have Sjogren's. If you think there is a possibility, then a lip biopsy might be best.

Thank you En bloc.

When I asked the staff how dry my eyes were, she just said, the right is more dry than my left. (That was expected because it was the right lacrimal gland that had inflammation and was operated on.)

Maybe they will use the "number" as the reference point in my next visit.
I am taking Restasis, Fresh Kote and Refresh PM. I used to take Thera Tears Supplement. Since the PN started, I changed to Omega 3,6,9.

I understand that the lip biopsy is the "gold" standard procedure to diagnose Sjorgren's.

I want to clarify, assuming I dont have dry mouth, and the affected area of Sjorgren's is, say, joints or lungs, does the lip biopsy will still be an effective diagnostic tool?

Sjogren's typically affects the salivary glands as part of the process, so the lip biopsy would still be the 'gold standard' for a diagnosis. The fact that you don't have dry mouth may indicate that it's another AI disease.

Hi en bloc,
Did I understand you right - if Sjorgren's affects eyes and lungs or joints or other areas but NOT the mouth, the lip biopsy will still reflect the diagnosis?

I had the Comprehensive ANA Profile and all negative.

Thank you.

If you don't have dry mouth, then you may not have lymphocytic infiltrates in the salivary glands...thus not Sjogren's, but one of the other AI diseases. Joint pain, fatigue, etc are common with several of the AI diseases. I don't remember what 'lung issues' you have (it's not detailed in this thread), but lung issues are also common in sarcoidosis. Of course lung issues like asthma, could just be independent and not related to your problem.

Could your dry eyes be a result of meds you take? Even simple allergy meds (benadryl) can cause dry eyes.

I will say that, (although uncommon), there are patients who don't have overly dry mouth (but it's usually at least minimally dry) and still test positive for Sjogren's (whether blood or lip biopsy). So it could still be possible to have a + lip biopsy. But since you sound like it's not dry at all, I would exhaust other AI diseases or other causes in general first before undergoing a lip biopsy.

Just curious... 1) what lung issues are you talking about? 2) do you have dry mouth at all or lots of cavities?

Wish I could be of more help, but your case doesn't sound typical or jump out at any particular disease. The dry eyes certainly go with Sjogren's, but odd without the dry mouth.

Thank you en bloc for your reply.

I have persistent shortness of breath and tightness in my neck (specifically the sternocleidosmastoid muscles). I used to have asthma but my last attack was in 1982. The shortness of breath has been on and off for 2 years now (more on "on"). This last 3 or 4 months, my breathing has become more difficult. I dont normally have wheezing and I dont have cough at all. I rarely experience wheezing. I had PFT in 2008 and 2010 - both normal. I had a CT scan of my chest and was also normal.

My ANA consists of the following tests: (most of which I dont understand;), but the important thing is they are all negative)
1. Anti-DNA (DS) Ab Qn
2. RNP Antibodies
3. Smith Antibodies
4. Antiscleroderma-70 Antibodies
5. Sjorgren's Anti-SS-A
6. Sjorgren's Anti-SS-B
7. Antichromatin Antibodies
8. Anti-Jo-1
9. Anti-Centromere B Antibodies

Well, in 2010, I had eye discharge for many months, they found an inflammation in my right lacrimal gland. The optha got a specimen from the gland for biopsy. Thank God, it was normal. After that, right eye has become very dry. The doctor said that both my eyes are dry (but I dont experience discomfort with my left eye). The only prescribed medicines I am on now are Synthroid and Gabapentin and of course Restasis and Fresh Kote. I am taking a whole bunch of supplements which are recommended in this forum.

Do you think sarcoidoisis can be seen in CT scan, if the lungs are affected?

I dont have dry mouth. I am wearing a bridge and I have dental fillings for most of my remaining teeth.

Definitely, I always feel tired. I associate my tiredness to the PN pain. But I am not sure.

I have sjogrens as a 2ndary disease related to my MS. I dont have a dry mouth, but I do have very dry eyes, skin and joint pain. I have punctal plugs in my eyes (tiny little plugs that stop water from escaping) and during flares or bad times I use a prednisolone eye drop which helps a lot.

I chose to not have the lip biopsy as the RA MD said it was not really needed since my ANA was negative, but since I had so many clear signs of the disease, she would mark me as + for 2ndary related to MS.

Even in the face of a negative biopsy there are many interventions you can take. Use eye drops (no preservatives!) I get the single vials so they dont spoil or contaminate. Ask your eye MD about plugs for your tear ducts. They dont hurt a bit, and make a world of difference. Drink plenty of fluids. Avoid hot baths as that can dry out your skin. Rest your eyes as much as you can. Avoid straining for things like computer games, reading for long periods or even staring at a movie screen for a long time.

Best of luck! :hug:

Thank you Dejibo for your thoughts!
The optha actually mentioned the plugs in one of my visits. But, I try to stay out of it for as long as I can... Restasis right now do some relief and FreshKote. I also use Refresh PM at bedtime.

Thank you for all your suggestions. I will take note of them.

Idiopathic PN,

Your SOB should be investigated further, by a pulmonologist. Lung damage from Sjogren's (typically, interstitial lung disease) can easily be seen on CT...so can Sarcoidosis. The SOB could also be cardiac in nature. Either way, it should be followed up.

Being diagnosed with Sjogren's with no dry mouth, no positive blood work and no biopsy is uncommon but I'm glad Dejibo is being treated just based upon symptoms regardless of what the underlining problem is...that's all that matters in the end.

Sometimes the cause of our PN and other problems is evasive. I hope you are at least getting suitable treatment for your PN, eyes, and find what is behind the SOB...so that can be treated as well.

Hi en bloc,

I will discuss about Sjorgren's with the rheumatologist tomorrow morning...

I have been reading about experiences of those who had lip biopsy and it seems a painful experience, though, you mentioned that your experience was not bad. Who normally perform the lip biopsy, ENT or the rheumatologist? Who has the better understanding of the disease?

I read today on one article that lip biopsy confirms not only Sjorgren's but may also confirm sarcoidosis and amyloid polyneuropathy. How true is this? This has never been mentioned in our forum (or maybe I have not just read it).

http://emedicine.medscape.com/article/1520068-overview

Thank you so much, en bloc.

There are some that have bad experiences with ANY procedure, so you will come across those who had one with the lip biopsy. Keep in mind that people don't go out of their way to post on a forum about good experiences, so I bet for every 1 bad experience there are hundreds that went fine...maybe even more.

Ask the doctor how much experience he/she has in doing these. I would stick with a large academic hospital as they would do more...also the pathologist reading it might have more experience, and this is just as important as the doctor doing the procedure. ENT's do them, so do some dermatologist (mine was done by a derm at Hopkins), and some oral surgeons. I don't know of many rheumys that do them, but that's not to say that some don't...I just don't think it's common. As for understanding the disease itself better, the rheumatologist.

And don't forget to request a copy of the pathologist report.

I have not heard of Sarcoidosis and/or amyloid polyneuropathy being diagnosed from a lip biopsy. Must be something new. Medscape is a reliable source, I'd be curious to know how or whatthey look at in this case that's different from diagnosing Sjogren's...which is looking (and counting) lymphocytic infiltrates.