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Old 03-26-2015, 02:21 PM #1
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Default 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.
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Old 03-26-2015, 03:05 PM #2
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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
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Old 03-26-2015, 03:49 PM #3
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did you have a positive test for SFN via skin biopsy as well as a positive lip test?
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Old 03-26-2015, 04:01 PM #4
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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)
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Old 03-26-2015, 04:02 PM #5
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Does this mean you are a candidate for IVIG?

http://www.ncbi.nlm.nih.gov/pubmed/19168191
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
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Old 03-26-2015, 04:19 PM #6
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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.
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Old 03-26-2015, 05:55 PM #7
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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.
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Old 03-26-2015, 08:41 PM #8
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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.
I'm sorry to hear you have sjogren's, but at least you found the potential culprit for your SFN.
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Old 03-27-2015, 11:18 AM #9
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Quote:
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.
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.
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Old 03-27-2015, 03:14 PM #10
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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.
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