Is this a positive lip biopsy? - The Australian Sj...

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Is this a positive lip biopsy?

Goldyukr profile image
5 Replies

I suffer from nonspecific autoimmune myositis, small fiber/autonomic neuropathy and dysautonomia. My autonomic doctor I just started seeing sent me for a lip biopsy since I have many of the symptoms often associated with sjogrens but am seronegative. My biopsy reads “minimal chronic inflammation” but also says “no large lymphoid infiltrates, interstitial fibrosis, or acinar atrophy”. The doctor who did the biopsy says the test was negative. However, my autonomic doctor says it’s positive due to the chronic inflammation. I’m so confused. Can anyone shed some light on this? Thank you

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Goldyukr profile image
Goldyukr
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ROXY6767 profile image
ROXY6767

I have never heard of a lip biopsy before related to sjogrens. I have had systemic lupus for 30 years, sjogrens, reynauds, nephritis, hypothyroid and hypoparathyroid. I have been trying to get treated for years for scaly cheilitis on my lower lip, it's really dry and peels badly.

First, they tried to tell me it must be some type of pre cancer, so they started doing these laser treatments to my lips, but that did absolutely nothing to help. Never once did any of the award winning hospital specialists I go to, consider the problem could be related to my autoimmune issues.

I hope you find help. Meanwhile, feel free to check out my information page on Facebook, called The Truth About Lupus and Autoimmune Disease.

Goldyukr profile image
Goldyukr in reply to ROXY6767

Thank you,. I’ll take a look at that. I hope you can find some sort of answer to your problem. Sounds very frustrating. Take care and thank you for responding.

socalgord profile image
socalgord

A lip biopsy is one the standard diagnosis criteria for Sjogren's. It is not required for diagnosis, but it is used, particularly in those patients without positive antibody readings. To meet the criteria for positivity, there need to be a certain amount of infiltration of the tissue by lymphoid cells (lymphoid infiltrates). Your biopsy results read that there was not the required amount of lymphoid infiltrate to meet the criteria for Sjogrens. The minimal chronic inflammation indicates something is going on, as your autonomic doctor referred to, but the biopsy itself did not appear to meet the criteria for Sjogrens.

Goldyukr profile image
Goldyukr in reply to socalgord

Thank you. I did see he put sjogrens on my list of diagnoses. He must think it was enough with everything else? I’ll be sure to ask more next time I see him.

Goldyukr profile image
Goldyukr

Sounds to me like you very likely could have it but I’m still in between diagnoses myself so I’m not the best to advise. However, it definitely does sound like you have autonomic problems, which often overlaps with sjogrens. I do as well. See if you can find someone who is experienced in recognizing and treating dysautonomia. It can really make a difference.

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