Lip Biopsy Results

[Tim]

The results from the lip biopsy were negative. So what does this mean? Anyone else have a negative biopsy with positive bloodwork and symptoms? Here is the bloodwork - Anti-dble Stranded DNA positive- SSA negative- SSB high positive- ANA positive - C3 & C4 normal- CPK high


Tim

[Jellyb]

Hi Tim,
My biopsy was negative also and so were all if my labs. My diagnosis is based on my eye docs opinion and symptoms alone.

Ther are a lot of folks here tgat know and understand labs, but my guess is a positive SSB and ANA, means sjogrens.

Others will post i am sure.

[anita]

Tim,

Do you have the actual results/report?  I'm curious how they graded it and what grading scale they used.  It is possible there was infiltrates, but not enough for a confirmation.  This might mean that you actually have Sjogren's (especially with the + blood work) but that it is in early stages so the damage to the glands is minimal.  Try to get a copy of the actual report and I'll try to help you go through it.

[Patty]

The standards for defining a lip biopsy as positive or negative are not consistent from lab to lab, so if your biopsy showed some infiltrates it may have been considered positive by one pathologist and negative by another. That is what happened to me. My opthamologist couldn't believe it was negative and when he pushed to get the actual report and slides reviewed by another pathologist it was considered positive.  Doesn't the positive blood work give you a dx? Mine was negative which is why I had the lip biopsy.

[SueAnn]

Mine biopsy inconclusive and I have positive bloodwork, ANA and SSB.  I wish I knew then that I would have been treated anyway and I wouldn't have done the biopsy.  Some people here have had negative bloodwork and a positive lip biopsy so you never know what might help out. 

SueAnn

[anita]

What Patty said, is exactly why I suggested getting a copy of the report.  Johns Hopkins (and many other large academic hospitals) uses the Greenspan grading scale which is easy to understand, yet precise as well.  They actually explain the grading right on the report.  It all comes down to how many foci (an aggregate of 50 or more lymphocytes, histiocytes, and plasma cells) are present within 4 mm sq.  In order to be a positive result there has to be at least one focus in this 4 mm sq.  If there are infiltrates, but no complete focus, then it is considered negative.  This is why I was saying to check to see if the listed the presence of infiltrates (lymphocytes).  It may be there is...just not enough for a positive result.  It may be in early stages.  Your positive blood work should be of consideration in your diagnosis.  But keep in mind that the ANA, SSA & SSB are "markers", not actual active disease.  There is no blood test for active disease.  The biopsy is signs active disease.

[Patze]

Hi Tim,

I'm sorry to hear that the test came out negative, and I sure know that one (mine showed some infiltration, but I guess not enough for a positive result (mine was about six years ago)).  Have you spoken to your doctor about the results?  Will he treat your symptoms based on your blood work?

Hang in there and take care of yourself -

Patze