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sero negative sjogrens?

Posted by theodora21 @theodora21, Jul 28 9:36am

i have had dry eyes, mouth, vaginal dryness my whole life. was tested in my 40s for sjogren's, all labs came back negative. I am sure I have it. Cn my dentist do tests or should i go to ENT? i have a continuous swollen salivary gland under my tongue. I am now 70 and worried about complications.

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artemis1886 | @artemis1886 | 14 hours ago

ENT biopsies the glands in your mouth
Eye doctor does two test for Sojourns. I got diagnosed this way. Then six months later my labs came back positive.
The dentist has no part in diagnosing Sojourns.

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jw9 | @jw9 | 9 hours ago
In reply to @lynda12345 "@lynda12345 Just doing more research my favourite pastime ha! Now this gets interesting 50 years ago..." + (show)
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@lynda12345
Just doing more research my favourite pastime ha!
Now this gets interesting
50 years ago at work I lost my sight for about 6 mins I had all kinds of tests with the exception of CT Scan of the head.
Saw a neurologist he said I had soft signs of MS
A year later I had Bells Palsy on the left side of my face.
Apparently there is a correlation with Sjogrens disease. (Affecting the nerves) Sjogrens disease may have been caused by bacteria or a DNA defect that allows the T cells to attack our healthy cells
Another symptom is dry salty scalp and loss of hair.
Don’t tie your hair back use a comb wash hair maybe once a week use a light oil
I found this out because my hair would not suds the salt was preventing it.
I know I go on but the more we know the better 😀

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@lynda12345
That's interesting about the "soft signs of MS". My two sisters have MS and both lost sight partially due to optic neuritis.
But then you discuss Sjogrens affecting the nerves. I have also read this. It isn't discussed much, except among people living with it!
I enjoy seeing how everyone has learned to cope...and keep on living!
Also, you have blown my mind with the salty scalp! Never heard that before!

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lynda12345 | @lynda12345 | 5 hours ago
In reply to @astaingegerdm "I had a different experience with Sjogren’s. It was part of an inflammation of my entire..." + (show)
Profile picture for Ingegerd Enscoe, Alumni Mentor @astaingegerdm

I had a different experience with Sjogren’s. It was part of an inflammation of my entire GI tract. My front teeth became see through due to lack of saliva. I was a patient at Mayo at the time and tested seronegative several times.
Eventually I was treated with immunosuppressive drug Imuran and all my GI symptoms disappeared, including Sjogren’s.

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@astaingegerdm
Well I hope the good news continues keep us in the loop😀

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