Author Topic: Question about biopsy result  (Read 4067 times)

2plustwins

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Question about biopsy result
« on: August 06, 2014, 01:30:54 PM »
Hello.  I'm new to forum.  I have many of the symptoms of Sjogren's (dry eyes, dry mouth).  I did NOT have the SSA or SSB antibodies.  I have a slightly elevated ANA, and continued to have elevated CRP (over 5 months time period).  I did have an elevated SED rate, but that is normal now.  My dr did a salavary gland biopsy and it said:

               Salivary gland, biopsy:  Minor salivary gland with one focus containing 50 lymphocytes.  See comment.
               Comment:  Sections demonstrate one focus of greater than 50 lymphocytes.
               This is not diagnostic of Sjogren's in this biopsy; however, it does not exclude the diagnosis.

My doctor (rheumatologist) said that while the biopsy showed some signs of Sjogren's, it wasn't completely positive.  So, she said she could not make the diagnosis of Sjogren's.  She said it required 2 focus points while mine only had one.  However, in a book (The Sjogren's Book by Sjogren's Syndrome Foundation), it says "When these aggregates contain more than 50 lymphocytes in a cross-section of gland tissue, they are termed lymphocytic foci.  The presence of one or more lymphocytic foci in a 4-sqaure millimeter area of salivary gland tissue is a feature of Sjogren's."   In Sjogren's.org, it also says "Lip biopsy showing focal lymphocytic sialoadenitis (focus score ≥1 per 4 mm2)".

Oh, I should mention that ENT was going to get more than 1 gland, but accidentally cut into a blood vessel.  So, instead of taking a second (or more) gland, he spent the time suturing the vessel multiple times.  So, unfortunately this is the only gland/specimen to check.

So, do any of you have experience with something like this (a slightly positive, but not quite, biopsy)?  The way it looks to me, the biopsy was positive and the pathologist and rheumatologist just weren't experienced enough to know?  The reason why this is important is because I have other issues (joint pain, joint swelling, poly neuropathy) that are not due to other auto immune issues.  My doctor said she was willing to put me on Plaquenil but not anything more because of "First, do no harm."  She said since biopsy wasn't positive, she can't confirm Sjogren's, so she can't consider any other alternative medication if plaqunil doesn't work.

Any thoughts are greatly appreciated!

kimberly64

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Re: Question about biopsy result
« Reply #1 on: August 06, 2014, 04:09:40 PM »
This  makes no sense to me.  I have never had this done but let me tell you slightly positive is positive.  Positive is positive period!  You should seek another opinion.  Sorry thats the way I see it.
Kimberly
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2plustwins

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Re: Question about biopsy result
« Reply #2 on: August 06, 2014, 05:04:41 PM »
Thanks Kimberly,

Actually, this was my second opinion.  My first rheumatologist relied on xrays from 3 years ago, did the standard autoimmune blood panel, and had this to say:  "Your ANA is positive, and you have elevated SED and CRP, but they are not THAT elevated.  You are one of 5% with these markers in your blood work that has no auto immune disease."  The first rheumy wouldn't even consider something unless you happened to be presenting with it.  For example, I get mouth ulcers all the time.  I just happened to not have any when I saw her at my first appointment, but then got three that went away, and then saw her again.  She said she wouldn't consider it a symptom unless she could see it for herself.  At my second visit with that first rheumy, she said, "I don't know what is wrong with you but I can't help you."  My symptoms were symmetrical joint pain and swelling in hands and feet, poly neuropathy, hair loss, unintentional weight loss (over 50 pounds), cold/heat intolerance.  I didn't think much of the dry eyes and mouth, except thought it was a sign of aging.  Three years ago, my optometrist confirmed that I had clinically dry eyes (and it wasn't just living on top of the hill with constant wind).  As for joint swelling, I had to get my ring sized 2 sizes bigger, even after my weight loss.  Sometimes, it fits great with room to spare and sometimes I can't budge it.

At least this new rheumy did new xrays and then told me it was possible to have Sjogren's without having positive antibodies.  But, I've also been diagnosed with Lyme Disease and this rheumy doesn't believe the results....says that they are false positive (something to do with the type of antibodies I was producing IgG and IgM).  While Lyme can mimic auto immune, my Lyme doctor didn't think this was possible with Sjogren's.  It usually mimics lupus and/or MS and/or RA.  However, I walked out of the office feeling like the new rheumy thought I was making it up or something.  She has also told me many things that contradict my Lyme doctor, but her knowledge about lyme is out of date (as I've read a lot of material on it).  I finally am feeling better, but have been on mega doses of antibiotics along with thyroid meds (from the Lyme dr).  My weight loss has stopped and I'm able to maintain my body temp.  Lyme dr says 5 to 6 months of antibiotics, but rheumy said it's not Lyme Disease if it is not cured within 30 days of antibiotics.  When she found out I was still taking them, she just shook her head in disgust and told me a doctor should "first do no harm."


kimberly64

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Re: Question about biopsy result
« Reply #3 on: August 06, 2014, 07:27:20 PM »
I also had Lyme disease years ago and my doctor said then a positive is positive, negatives can be false with Lyme.  I test negative for Sjogrens so far but have severe dry mouth and eyes and sinuses without medication.  As long as they make my life comfortable I dont care to deal with doctors and their politics of what has to be just so for a diagnosis, it doesnt change the fact there is no cure and I can get the medicine I need without their labels and I am much happier not dealing with them as often.
Kimberly
Sjogrens, Evoxac, Restasis , Omega3

rnathans

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Re: Question about biopsy result
« Reply #4 on: August 06, 2014, 08:33:03 PM »
My biopsy came back the same as yours. Foci, but not enough to make the dx per the lab. BUT, my rheumy said there was no other reason for me to have any foci, that another sample might have had more, and in conjunction with my symptoms she was pretty sure I had Sjogrens . BTW she said this even though I am seronegative.

Because most of my symptoms are neuro I am now treated by a neurologist. I have been on various immunosuppressants over the years. For the past few years I have been on very low dose methotrexate (my liver enzymes go up on higher doses) as well as IVIG.

kimberly64

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Re: Question about biopsy result
« Reply #5 on: August 07, 2014, 08:02:04 AM »
2plustwins if you dont need the validation of a diagnosis and you know your symptoms are what they are Sjogrens just take what treament they offer and move on.  Some want this diagnosis for disability or other reasons.  It is so stressful and frustrating dealing with the doctors and the politics and red tape just to have a label.  I am much less depressed just seeing a doctor when I need a refill rather than subjecting myself to test and more test while I am pretty stable with the meds I have.   Take care okay.
Kimberly
Sjogrens, Evoxac, Restasis , Omega3

2plustwins

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Re: Question about biopsy result
« Reply #6 on: August 08, 2014, 02:14:21 PM »
Kimberly, The reason I was concerned about diagnosis is that my doctor said if plaquenil didn't work, rheumy doc wasn't going to consider any other option since it was "not a completely positive biopsy".  I guess I'm getting ahead of myself because she said it would take two months to know if plaquenil will work or not.  I always like to have a Plan B ready in the background if Plan A isn't working out.  But, rheumy doc would not consider a Plan B.  So, my Plan B is to either give her compelling information that shows biopsy was positive, or go to another rheumy.   The concern about going to another rheumy is finding one that would consider symptoms and biopsy to be significant enough to treat with other methods should plaquenil not work.  What meds are you taking?

rnathans, I'm curious about your neurological symptoms.  The neurologist in my HMO discounted my symptoms and said "You're not in Kansas anymore."  Instead of examining me, he said I wasn't getting enough restorative sleep (I sleep 8-10 hours and have no trouble going to sleep) and that was causing my symptoms.  He also said to (and this blew me away) 1) Read a particular book on stress illness, 2) get a FitBit bracelet to record my steps and sleep, 3) watch Saving Mr. Banks, and then 4) watch Mary Poppins.  He said Saving Mr. Banks was about dealing with adversity.  THANKFULLY, my Lyme Dr referred me to an out of network neurologist who actually ran several tests.  The neuropathy is REAL.  The lack of balance and coordination, the slow reflexes, the positional awareness are all REAL.  I even had neuropsychology testing that revealed problems associated with my frontal lobe.  I have not been back to the neurologist yet to go over what all this means.  But, I'm convinced that no amount of restorative sleep will cure my symptoms.  My fitbit bracelet reveals that which I knew, that I'm getting plenty of good sleep.  I'm curious about your symptoms because I don't know if my neurological symptoms are related to Lyme or Sjogren's. 


kimberly64

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Re: Question about biopsy result
« Reply #7 on: August 08, 2014, 03:26:38 PM »
I understand, try the first drug and if doesnt work find a new doctor who doesnt treat by a test result.  There are false negatives in many diseases and I didnt go to medical school to know that. Its all a shame how doctors treat the very ill because a marker isnt there but you are clearly ill. I have a doctor that left it up to me to take the drug you speak of but I chose not to yet because I only have dry issues and sensory problems and I test negative.  He was my second Rhuemy, the first treated me like I was lying and he was a disgrace to his practice and profession and I let that be known to the head of his pratice that this doctor had no business treating the chronically ill or elderly for that matter.  He was young and very pompus but i was validated when the office manager agreed with other similar complaints and offered to personally refer me to a new practice as the main doctor there who has an excellent reputation was full mainly because people had switched from the one I saw to her.
Kimberly
« Last Edit: August 08, 2014, 03:30:49 PM by kimberly64 »
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irish

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Re: Question about biopsy result
« Reply #8 on: August 08, 2014, 09:34:13 PM »
I had a positive lip biopsy much to the surprise of all my doctors. It was just a fluke that my rheumy ordered it and no other doc thought that it was autoimmune---even though I had been telling docs for 10 years that it was autoimmune. What the heck else can it be when you feel like crap and nothing else shows up...

With that being said, I do think that these darn lip biopsies are highly over rated and cause more trouble than they are worth. I never had positive blood work tip 2 years after my positive biopsy. I also have never had an elevated sed rate. I was ill for 40 years prior to having positive ANA and sjogrens blood work. THere are so many people with autoimmune disease who are seronegative and who end up with failed lip biopsies or negative biopsies. It is getting to the point that it seems to be a waste of money and a big stressor for people.

People get the biopsy and wait on pins and needles thinking that they will get some useful info and then the specimen is faulty or some other issue arises. The docs should be treating your symptoms and if you have had some elevated sed rates on occasion that would sure lead me to suspect that you could have some type of autoimmune issue. Actually, sometimes it really doesn't even make any different if they give your symptoms a name. All they need to do is treat the symptoms.

The other thing is---no diagnosis is frequently good as it doesn't show up on your insurance and cause you to become higher risk or uninsurable. People, do not panic about lack of diagnosis. Just keep bugging the docs for treatment. Plaquenil is the drug of choice for early treatment of sjogrens, lupus, rheumatoid arthritis and other autoimmune diseases. Prednisone is also used and if no relief they often try the big gun meds---immune suppressants.

If you doc is not being cooperative then try to find one who will be. Ask the receptionist or nurse at the new clinic if your new doc treats autoimmune disease and is likely to pursue treatment for you and refer you if necessary. Good luck. Irish

anita

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Re: Question about biopsy result
« Reply #9 on: August 08, 2014, 10:30:37 PM »
My experience with the lip biopsy was fairly good.  The doctors at Hopkins seemed to know what they were doing, enough samples were taken, the incision was closed properly,antibiotics given, and results were done in 2 days.  And they actually set out the grading system on EACH result so the patient can see how they came to their conclusion.

It was done by Greenspan, LLP

Grade/4mm           Lymphcytes & Plasma cells

Grade 0                        = Absent infiltrates
Grade 1                        = Slight infiltrate
Grade 2                        = Moderate infiltrate or less then one focus* /4mm sq

Grade 3                        = one focus* present per 4 mm (sq)  **Sjogren's Diagnosis
Grade 4                        = more then one focus* per 4 mm (sq)  **Sjogren's Diagnosis

*Focus is an aggregate of 50 or more lymphocytes, histiocytes, and plasma cells,

According to the scale used on my Johns Hopkins report listed above, you would be diagnosed with Sjogren's...NO DOUBTS AT ALL.  It' pretty clear and straight forward...and you fulfill the criteria.  I would consider having it read somewhere else...like Hopkins.  They DO accept outside slides to be sent in for reading/interpretation.  Just a thought.
 
52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

2plustwins

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Re: Question about biopsy result
« Reply #10 on: August 09, 2014, 05:45:51 AM »
Thank you all for taking the time to respond.  Anita, thank you for sharing that specific info from John Hopkins.  I may pursue sending my slides there if I need a Plan B.

rnathans

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Re: Question about biopsy result
« Reply #11 on: August 09, 2014, 04:26:42 PM »
My neuro symptoms started with relatively mild neuropathy- in that I had numbness and tingling but thankfully no pain. It did impact my walking long distances though. I also had abnormally brisk reflexes as well as some myopathy in my quads as well as spasticity. Then I developed SEVERE gastroparesis , an autonomic neuropathy. I lost 60 pounds. It was at this point that a neuro suggested ai might have Sjogrens and the biopsy was done. Because I was so ill at the time I was put on a year course of cytoxan, a very strong immune suppressant. I would say it 90percent cured the gastroparesis.

Since then I was on milder immunosuppressants and IVIG to slow progression of my other neuro issues.