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Old 03-27-2015, 04:05 PM #11
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You might want to get a copy of your biopsy results. A lip biopsy should be 'graded' using one of the several reputable scales (like Greenspan).

There really shouldn't be a 'gray' area on this. All lip biopsies look for the same thing...signs of autoimmune infiltration of the minor salivary glands. The grading scale is based on the number of foci found. A focus is equal to an aggregate of 50 or more lymphocytes, histiocytes or plasma cells. A diagnosis of Sjogren's requires at least TWO foci be present.

Therefore, get a copy of your results and see what it says. it may show just one focus and the pathologist is noting the presence of lymphocytes (which is abnormal in any amount), but not enough to qualify an outright diagnosis of Sjogren's. This actually happens quite often (just having one focus). It can be a sign of early disease process...and if retested later, likely more foci will show.

There are many rheumy's that consider any significant infiltration of lymphocytes enough for a Dx and warrant treatment. Personally, I agree...since it's obvious the lymphocytes aren't supposed to be there at all, so any amount indicates an autoimmune process in the works.

If you get the results and find it wasn't graded using a reputable scale, then you always have the option of sending the tissue slides to Johns Hopkins for another reading and interpretation (this is also something done quite often, as many pathologists are not very experienced in grading lip biopsies).
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Old 03-27-2015, 08:05 PM #12
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Lightbulb

It seems to me that your doctor does not
Understand the meaning of "equivocal".
Substitute "ambiguous" in the doctor's statement,
and it reads-- ambiguous and indicative.
That seems confusing to me!
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Old 03-27-2015, 08:19 PM #13
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You're right Mrs. D, and that's actually pretty funny.

I guess any inflammation there is not good, but I'm trying to find out if there are any other causes besides sjogrens that could cause lymphocytes there. I can't find any answers so I'm left to believe that it is Sjogrens in the early phase with advanced small fiber neuropathy everywhere.
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Old 03-27-2015, 09:51 PM #14
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I saw a link to a lip biopsy test that said you have to avoid
Aspirin and other NSAIDS for at least 2 weeks before the
Test. Did they tell you that ?
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Old 03-27-2015, 11:14 PM #15
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Quote:
Originally Posted by mrsD View Post
I saw a link to a lip biopsy test that said you have to avoid
Aspirin and other NSAIDS for at least 2 weeks before the
Test. Did they tell you that ?
That, and of course, steroids itself....most important to avoid. Anything that has an impact on the inflammation should be avoided before the test.

I'd be interested in knowing as well if they gave you these instructions?

I certainly wouldn't start Plaquenil until you have all testing completed.
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