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Sjogren's test negative, but....

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Unread 04-18-2012, 07:32 PM   #1
Idiopathic PN
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Default 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.
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Unread 04-18-2012, 07:50 PM   #2
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Default 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.
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Unread 04-18-2012, 08:03 PM   #3
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Originally Posted by Karli View Post
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.
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Unread 04-18-2012, 08:51 PM   #4
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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?
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Unread 04-19-2012, 06:59 AM   #5
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Originally Posted by en bloc View Post
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.
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Unread 04-19-2012, 08:18 AM   #6
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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.
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Unread 04-19-2012, 02:35 PM   #7
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Quote:
Originally Posted by en bloc View Post
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.
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Unread 05-10-2012, 12:37 PM   #8
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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?
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Unread 05-10-2012, 04:38 PM   #9
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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.

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Originally Posted by Idiopathic PN View Post
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?
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Unread 05-10-2012, 06:21 PM   #10
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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.

Quote:
Originally Posted by en bloc View Post
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.
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