Next new diagnosis- Sjogrens
 

So with the small fiber neuropathy all over my body and autonomic dysfunction diagnosed, my last test was the lip biopsy. It came back "equivical" for sjogren's.
I'm trying to absorb this. I was so desperate to think this was something that was going to go away.:(

Does this mean you are a candidate for IVIG?

http://www.ncbi.nlm.nih.gov/pubmed/19168191

did you have a positive test for SFN via skin biopsy as well as a positive lip test?

Yes. The skin biopsy was significant damage and the lip biopsy shows inflammation (lymphocytes)

Nope.
I asked my doctors and they said to try Plaquenil. My neuro said there are many risks with IVIG. I would try it anyway to have my life back

That is odd since I was just reading how IVIG is one of the safest compared to other immune treatments.

IVIG is safe compared to some other immune treatments...because the others are suppressors and can cause severe infection, etc. But IVIG carries it's own set of other risks like blood clots, kidney damage etc.

I'm sorry to hear you have sjogren's, but at least you found the potential culprit for your SFN. :)

To the best of my knowledge... equivocal results in a test, means "unclear" or ambiguous. Meaning it should be rerun in the future to clarify.It is not a definite diagnosis therefore.

unequivocal means definite.

Of course, in medical areas, there can be lots of equivocal situations with tests and biopsies. Alot of interpretation can exist.

Thank you so much for this.
I spoke to the rheumatologist and the neurologist and they would not explain it. I kept saying "so this doesn't necessarily mean sjogren's" and they kept saying "it is indicative of sjogren's".
The rheumatologist said that normal people do not go walking around with inflammation in their salivary glands.

I kept repeating..."but isn't chronic inflammation going to be the case for many situations.. pathogens, bacteria, virus?" or questions of that nature. She would not comment, she just kept repeating equivocal and indicative.

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).

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!

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.

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.