Author Topic: Biopsy results  (Read 3451 times)

gphx

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Biopsy results
« on: July 08, 2010, 01:41:05 PM »
I got the final results of my lip biopsy back. As far as I can see all of the elements are there including lymphocyte and plasma infiltration, hyperplasia, chronic inflammation, and fibrosis, a destruction of the tissue.

The lab and my oral surgeon tell me it does not indicate Sjogren's. The reason he gives is that though the elements are present, lymphocytes in people with Sjogren's are arranged in bands, not clusters as mine are. This is strange to me because the literature discusses 'focal points' of lymphocytes in Sjogren's and clusters have focal points whereas bands do not. I just don't get it.

Unless someone has some insights for me my next stop will be a rheumatologist for a second opinion or other suggestions.

If it isn't Sjogren's it's something that does exactly the same thing.
Dxed unspecific 'sicca syndrome' eyes and mouth. Neuro issues, muscle weakness. SS Seronegative but high inflammatory markers. Diabetes dx 2010. Glucose control improved neuromuscular issues. Enlarged thyroid under observation 2013. Yippee.

inga

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Re: Biopsy results
« Reply #1 on: July 08, 2010, 02:15:48 PM »
Honestly, the entire field of rheumatology is confused.   The lip biopsy is just another quagmire.

ohiolady

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Re: Biopsy results
« Reply #2 on: July 08, 2010, 02:26:06 PM »
I think Inga hit the nail on the head.  It is ridiculous when someone presents themselves with all the symptoms of a disease and if you don't fit into a neat litte box, then they don't know what to do with you.  I'm also seronegative and refused the lip biopsy.  I do have antibodies for Hashimoto's so the rheumatologist let up on the lip biopsy.  Good luck with your care.

Anna
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gphx

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Re: Biopsy results
« Reply #3 on: July 08, 2010, 02:47:35 PM »
One of the phrases on the report was 'chronic sclerosing sialadenitis'. I found a research paper today that said in 32 patients with this condition 32 of them were due to autoimmune disorders. So I have an autoimmune disorder exactly like Sjogren's that isn't but no one can identify. It was almost funny when I asked the doctor if it wasn't Sjogren's what was it. He told me it was inflammation. Um, yeah, doc, inflammation is a symptom not a cause. I bet some people even accept a nonanswer like that.

Oh well, seeing that some folks here have shared my frustration makes it much better somehow. Thanks!
Dxed unspecific 'sicca syndrome' eyes and mouth. Neuro issues, muscle weakness. SS Seronegative but high inflammatory markers. Diabetes dx 2010. Glucose control improved neuromuscular issues. Enlarged thyroid under observation 2013. Yippee.

PrincessLeah

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Re: Biopsy results
« Reply #4 on: July 08, 2010, 03:38:37 PM »
My doctors told me that a lip biopsy can show a lot of things (not just Sjogren's.)  Any inflammation (from an acute infection) can cause lymphocyte infiltration (although your results said chronic inflammation).  Also, conditions like sarcoidosis can cause lymphocyte infiltration.  So I'm not sure why they would say "not Sjogren's", and then not follow up on what's really going on, since there is obviously something going on.

I would suggest that you talk to your rheumy about having another lab (teaching hospital?) view the biopsy.  They may be willing to look deeper or may have a completely different determination of the results, and you won't have to go through another biopsy.  (And if your biopsy experience was anything like mine, it's not something I would recommend going through once, much less twice.)  Easier said than done, I know.  But any rheumatologist worthy of their medical degree who reads that would be concerned about what's going on.

(I went through the biopsy and got the result:  "no significant inflammatory foci are identified."  My rheumy is still treating me, even though the biopsy was, for all intents and purposes, negative.  I can't believe someone wouldn't try to treat you when there's obvious damage.)

anita

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Re: Biopsy results
« Reply #5 on: July 08, 2010, 03:47:18 PM »
I would consider having the tissue sent to another lab (at a university hospital with some reputation).  You would need your doctor to make the recommendation for the second opinion, but may not actually have to SEE a new doctor there...just have the biopsy reread.

The focus is an aggregate of 50 or more lymphocytes.   Not the same as a focal point.  But I do believe the Greenspan scale does not differentiate between a band or group as long is there is more than 2 foci within a certain area.

Good luck
50 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (PID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Nitro, Cardizem, Imdur, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Oxycontin, Zofran

catsrule

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Re: Biopsy results
« Reply #6 on: July 08, 2010, 05:15:38 PM »
Hi There, I've been a lurker for a while and there have been so many times I wanted to post out of frustration. This is one of those times! Here is a link to John Hopkins which provides the American-European Concesus for Criteria for Sjogren's. http://www.hopkinssjogrens.org/disease-information/diagnosis-sjogrens-syndrome/americaneuropean-consensus-criteria-sjgrens-syndrome/

"Lip biopsy showing focal lymphocytic sialoadenitis (focus score ≥1 per 4 mm2) "

I asked Dr. Carteron on ask the Dr. website at (http://www.sjogrensforum.com/ask-the-doctor/) what her opinion was per the following question.

I have a positive ANA of 1:640, SSA/SSB negative. Other AI lab tests all
negative. My lip biopsy pathology reads as: Mild chronc inflammatory infiltrate
noted including one lymphocyte focus consisting of >50 lymphocytes.

(By the way my ANA is speckled.)

Her response was:  A:  Although the US-European Consensus Criteria for diagnosing Sjogrens are designed for defining groups for Research and should not be used soley for diagnosing pts in clinical practice, you would even meet the criteria for a diagnosis of Sjs and would be considered for a research trial. Whether you have primary or secondary Sjs depends on a full evaluation to exclude other autoimmune disorders. The US-EU Criteria use a Focus Score (lymphocyte group) of Greater than or Equal to ONE.

I don't have a formal diagnosis as of yet as I am waiting for an appointment with a rheumatologist specializing in Sjogrens, IF I get one with this Dr. I don't know if my report is going to suffice as the ENT who did the test may not have selected sizes of tissue large enough for the diagnosis. 

I have to question how well an oral surgeon is familiar with the diagnostic criteria as advised on the website noted above. My ENT advised she was on the fence with the pathology report and recommended a rheumatologist to diagnose.

This criteria is also posted on Sjogren's Foundation Org website: http://www.sjogrens.org/home/about-sjogrens-syndrome/healthcare-providers/diagnosis-criteria "IV. Histopathology Lip biopsy showing focal lymphocytic sialoadenitis
     (focus score ≥1 per 4 mm2)2"

Please note there are other factors that need to be ruled out in order to obtain one of those *in the box* diagnosis. However, *clinically, you CAN be diagnosed and treated if you find the right Dr.

Carolina

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Re: Biopsy results
« Reply #7 on: July 08, 2010, 05:19:38 PM »
Ok, catsrule (I agree) and everyone else!

This stuff makes me crazy go nuts.

I just had to say that.

Kisses

Carolina
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gphx

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Re: Biopsy results
« Reply #8 on: July 08, 2010, 06:37:42 PM »
This is already the second lab tech to look at it. The first time they didn't include the Greenspan scale which is why I requested it be reexamined and this included so an independent physician could draw his own inclusions. The second time they didn't include it either. My understanding is grading is a standard part of lab procedure. Maybe a second lab is precisely the way to go. You're right, an oral surgeon is outside of his area in diagnostics (through by design, no fault of his own). I went directly to an oral surgeon because my pc refused to recognize there was anything wrong with me at all even when I hobbled into his office on crutches. I hope this isn't just typical of rural areas. Thanks to everyone for some great responses.
Dxed unspecific 'sicca syndrome' eyes and mouth. Neuro issues, muscle weakness. SS Seronegative but high inflammatory markers. Diabetes dx 2010. Glucose control improved neuromuscular issues. Enlarged thyroid under observation 2013. Yippee.

anita

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Re: Biopsy results
« Reply #9 on: July 08, 2010, 09:23:20 PM »
If the second review came from the SAME lab, i really would consider getting it sent to another lab.

Johns Hopkins uses the Greenspan scale which I sited as did, Catsrule.  However my copy is not very clear and I missed the "equal to" sign.  Yes, it is in fact greater than or "equal to" 1 focus within the 4mm (sq)...for "the minimum requirement of a sjogren's diagnosis", which is a grade 3.  Note that a focus is an aggregate of 50 or more lymphocytes, histocytes, and plasma cells.  A grade 4 is 2 or more foci within the same 4mm (sq). 

The other grades are as follow:

Grade 0  absent infiltrates

Grade 1 slight infiltrate

Grade 2 moderate infiltrate or less than 1 focus per 4 mm (sq)

Chronic inflammation does not alone give it a grade 3 or above.  It is completely based upon the number of lymphocytes (and others) present in the focus within that 4mm (sq)

To add yet another twist and exception to the rule, this is what mine says:

"Although, the Greenspan scale would only grade this specimen as a grade 2, the loss of acini and degree of fibrosis are very typical of Sjogren's at end stage".  There were other technical descriptions of the amount of obvious chronic inflammation, but there was so much damage that "infiltrates" weren't even present any more...yet the degree of damage was consistent with long standing infiltration, so they finalized that the findings are that of long term sjogren's damage.

So not ALL samples fit the exact criteria and therefore you need an 'expert' in reading these particular types of biopsies...like that of Hopkins or another reputable clinic.

I really think you should research another lab for an 'objective' (not just another tech) review from a big teaching hospital.  I THINK arrangements can be made for a place like Hopkins to read it even though you did not have it done there.  Mayo re-read a nerve biopsy that I had done in TX almost a year before (the actual tissue), so it can be done.

50 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (PID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Nitro, Cardizem, Imdur, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Oxycontin, Zofran

gphx

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Re: Biopsy results
« Reply #10 on: July 08, 2010, 11:00:46 PM »
It was originally sent to the University of Washington. Not sure what their Sjogren's rep is.  :)
Dxed unspecific 'sicca syndrome' eyes and mouth. Neuro issues, muscle weakness. SS Seronegative but high inflammatory markers. Diabetes dx 2010. Glucose control improved neuromuscular issues. Enlarged thyroid under observation 2013. Yippee.

catsrule

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Re: Biopsy results
« Reply #11 on: July 09, 2010, 05:03:25 AM »
Yep, crazy go nuts it is!

I don't know what the Greenspan Scale is. Where can I find good info about that? Then again, I'm asking myself do I really want to know? ... Just one more piece of criteria that will frustrate me as Dr's tell me because of it, I don't have it!!

Patze

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Re: Biopsy results
« Reply #12 on: July 09, 2010, 06:59:22 AM »
Hi Gphx,

Ouch, like the others, I think that's just nutty! 

The report I got for my sample didn't mention the Greenspan Scale either (only had a couple of lines on it), and it did mention that there was inflammation and some infiltration (what ever that means), but not enough for a definitive diagnosis. :o :-\  Yep, still scratching my head over that one.

Take care of yourself -

Patze
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anita

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Re: Biopsy results
« Reply #13 on: July 09, 2010, 09:01:08 PM »
Greenspan grading scale is what the pathologist at Hopkins (and some others) use.  It matches the very article Catsrule provided.  The grading scale is written out on each and every result...that's where I got it from (my report).  If you Google lip biopsy/Greenspan scale you'll pull up several articles, but most are just the abstracts, not the entire article.

I'd like to know how these other labs are grading the amount of inflammation they see...if they are not using SOME type of scale.  many people say their results show inflammation, but not enough for a diagnosis...yet NO basis for how the pathologist came to that conclusion.  There are parameters for everything, yet many pathologist won't provide you with the parameters they are using.

That's the only reason I trust the Hopkins results...since they use an actual grading system that is very specific.  Saying "some" or even "chronic" inflammation does not really define anything specific.  Chronic at least shows that something has been going on for a while, but many things cause sicca, so long term drying antihistamines could cause sicca, but looking for specific groupings of lymphocytes, histocytes, and plasma cells, are quite a bit different.

50 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (PID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Nitro, Cardizem, Imdur, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Oxycontin, Zofran

sleeeepy

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Re: Biopsy results
« Reply #14 on: July 09, 2010, 11:40:32 PM »
I too think that the whole lip biopsy evaluation process stinks!!  I had a lip biopsy done this past October that showed scant infiltrates of lymphocytes ..so considered NEGATIVE!!

BUT just a few weeks ago I had a Sialography done on my salivary glands that showed pretty close to a 100% destruction of my salivary glands...go figure. 

We can't be relying on the results of the lip biopsies unless they are done by a lab that KNOWS what they are looking for, because they have seen it many times before.

Also I think that not enough tissue/gland material is taken to get an accurate reading sometimes.  The gland right next to the one they take could be positve, while the one they did take could be negative.

This is all so confusing....especially for myself and others that are seronegative....except for me I do have a positve ANA titre of 1:80 speckled pattern..I think that is how it is written...LOL

Take care Mary