Author Topic: Looking for input on biopsy results  (Read 512 times)

Searching

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Looking for input on biopsy results
« on: September 02, 2013, 06:46:53 PM »
Hi I have small fiber neuropathy and POTS.  I'm looking for the underlying cause of my symptoms and after a very positive Schirmer's test (scored a 1 in both eyes) thought Sjogrens might be a real possibility.  I tested negative for the antibodies and had a negative lip biopsy.  I'm not confident, however, that the biopsy was done properly and wanted to get input on that.  Here's what it says:

"Sections show four small biopsy fragments, three with benign salivary gland tissue (one fragment with fibroadipose tissue and squamous epithelium), with normal, preserved acinar and ductal architecture.  There is no atrophy, fibrosis, or inflammation.  The total biopsy area is 10mm2.  A focus is defined as an aggregate of 50 or more lymphocytes and plasma cells.  Therefore, there are no "foci" to be able to count.  There are no histologic features which would be required for a diagnosis of Sjogrens Syndrome."

What I'm questioning I think is the "4 small biopsy fragments" - did she get a large enough sample.  I thought posting here might be good bcause some of you might be familiar with biopsy protocol and report wording.  Any input would be appreciated.

litliwlowa

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Re: Looking for input on biopsy results
« Reply #1 on: September 02, 2013, 07:34:02 PM »
Hi "searching" and welcome!

geesh, your biopsy report was much more detailed than mine. All mine said was no sjogrens. Like you, I questioned whether my ENT obtained sufficient sampling.

I have no input to offer except that I was negative on the bloodwork and had negative lip biopsy. My rheumy and opthalmologist stand by diagnosis of Sjogrens-Primary.

Now as far as the fibroadipose tissue? I know that adipose is fat cells. Just had two lipomas removed the past couple of months and those were adipose tissue (benign fatty tumor basically)

Not sure about fibroadipose.

There are a few of us sjoggies that are seronegative and also had negative lip biopsy. My rheumy told me that there are false negatives even on lip biopsies.

Not sure why that is, and it is sure confusing, in my view. However, my docs are treating the symptoms which really helps with the dry everywhere.

My Shirmers was positive too, by the way. After many months of trying all the replacement tears, dousing several times an hour, my eye doc finally started me on Restasis. Rheumy also started me on generic evoxac and generic plaquenil. Compared to where I was when diagnosed? Like night and day, especially for my eyes.

I'm sure others will respond to your post as well, who are more knowledgeable on the seronegative aspect.

Hugs,

Amanda
SJS-Primary; Hashi's, Post surgical hypothyroidism, Hypoparathyroidism, Spondylolithesis, L&C Facet Arthropathy, Fibro, gluten intolerance, TBI, Radiculopathies, Neuralgias, Osteoporosis, GERD, Asthma, Allergies. Sphincter Dyssynergia. OSA, Fasciitis, Cervical Spondylosis, Cancer

anita

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Re: Looking for input on biopsy results
« Reply #2 on: September 02, 2013, 08:16:19 PM »
It appears your biopsy is in fact negative.  Although the part you question may look like there wasn't a sufficient sample, the focus area they look for is within a 4mm(sq) area...and your sample had 10 mm(sq).  So I think it was enough.  Also, it clearly states that the acinar structure is intact...it would not be if it was a positive result.  There would be scaring, fibrosis, etc.

Not sure what other AI diseases they have looked at, but dry eyes and mouth can be found from may different causes other then Sjogren's.  The most common is medication. 

Hopefully they are at least treating the dry eyes.  I'll assume your SFN is being treated as well.

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

Searching

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Re: Looking for input on biopsy results
« Reply #3 on: September 02, 2013, 09:07:03 PM »
Thank you both for your responses.  Anita, this may sound silly, but are "fragments" enough for analysis - do they not need to be whole glands?  I'm not on any medication to explain the dry eye.  My goal has been to figure out what's causing the small fiber and autonomic neuropathy so that can be treated and hopefully improve my dysautonomia (POTS) symptoms.  Amanda, I don't know how you found a Rheumy who would diagnose Sjogren's without positive blood or biopsy, but good for you and I hope the treatment is helping you feel better. 

litliwlowa

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Re: Looking for input on biopsy results
« Reply #4 on: September 02, 2013, 09:26:27 PM »
Thank you both for your responses.  Anita, this may sound silly, but are "fragments" enough for analysis - do they not need to be whole glands?  I'm not on any medication to explain the dry eye.  My goal has been to figure out what's causing the small fiber and autonomic neuropathy so that can be treated and hopefully improve my dysautonomia (POTS) symptoms.  Amanda, I don't know how you found a Rheumy who would diagnose Sjogren's without positive blood or biopsy, but good for you and I hope the treatment is helping you feel better.
Part of that may have been the way my then PCP referred me. For the first time in 3 years, she actually examined me. That included my hands, the tenderness and weird appearance of my arm muscles, my obviously horridly dry crusty nose, beyond dry as a desert eyes, after a few trips to ER and urgent care, barely any saliva in my mouth, etc, plus the fact I already had one AI - Hashimoto's autoimmune thyroiditis. PCP's impression and referring diagnosis was scleroderma and Sjogrens.

Plus my opthalmologist's dx of Sjogrens primary helped. Definitely had almost no tear film to speak of on my corneas.

I haven't yet been to dermatology for the skin issues. PCP who initially referred me to Rheumy definitely saw indications of connective tissue related AI.

Rheumy based his findings on exam, medical history, I was in obvious flare at first visit dry everywhere, including dry bum, plus he is knowledgeable enough about Sjogrens that he acknowledges that lab tests and lip biopsies don't always show positive even though the patient clearly has sjogrens. Plus, I've responded with improvement once treatment approach began for sjogrens.

Plus I have prior history of possible MS, again that was during a flare years ago, which has overlapping symptoms. I'm not convinced MS is completely ruled out actually. Those symptoms returned and it's been 12 years since last brain scan, and prior ones were NOT normal - showing multiple white matter lesions.

It's very confusing to me actually, as I am more used to having medical issues that have definitive tests and definitive consistent results.

So at this point, symptoms are being treated and it is helping.

Sometimes I do wonder if, in the absence of definitive positive results, the actual diagnosis is more the doctor's judgment. Some, like my ENT, have a different opinion. She messaged me after lip biopsy all happy that I didn't have sjogrens. Changed her dx to SICCA. But last visit with her, she had upgraded dx to Sjogrens.

I read in the threads here that some test positive only to later test negative.

AI's are simply confusing. As far as the current diagnostic criteria, the only thing I was missing on the list was the lab and lip biopsy validation.
SJS-Primary; Hashi's, Post surgical hypothyroidism, Hypoparathyroidism, Spondylolithesis, L&C Facet Arthropathy, Fibro, gluten intolerance, TBI, Radiculopathies, Neuralgias, Osteoporosis, GERD, Asthma, Allergies. Sphincter Dyssynergia. OSA, Fasciitis, Cervical Spondylosis, Cancer

paisley62

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Re: Looking for input on biopsy results
« Reply #5 on: September 02, 2013, 10:48:59 PM »
Hello,

They biopsy the tissue, and them make a slide from it.  The thin tissue on the slides are fragments of the lumps of tissue that they cut out of your lip:  if these fragments were not sufficient for microscopic analyses then they could have just made a new microscope slide.  That is how I read the technician's report, but I am not a doctor.

As previously stated, your lip biopsy is negative, with no inflammation noted, and normal, preserved acinar and ductal architecture.  You also have negative blood tests for Sjogren's antibodies.

You should be very happy that you don't have Sjogren's, although I can understand wanting to have a diagnosis that explains your symptoms.  Hundreds of of things cause dry eyes other than Sjogren's.

slccom

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Re: Looking for input on biopsy results
« Reply #6 on: September 02, 2013, 11:22:16 PM »
Hello,

They biopsy the tissue, and them make a slide from it.  The thin tissue on the slides are fragments of the lumps of tissue that they cut out of your lip:  if these fragments were not sufficient for microscopic analyses then they could have just made a new microscope slide.  That is how I read the technician's report, but I am not a doctor.

As previously stated, your lip biopsy is negative, with no inflammation noted, and normal, preserved acinar and ductal architecture.  You also have negative blood tests for Sjogren's antibodies.

You should be very happy that you don't have Sjogren's, although I can understand wanting to have a diagnosis that explains your symptoms.  Hundreds of of things cause dry eyes other than Sjogren's.

Unfortunately, that doesn't necessarily mean that you don't have Sjogren's. There are a lot of people with negative tests.

The actual diagnosis isn't necessarily such a big deal. What is important is that you get treated for your symptoms. If we get to the point where a precise diagnosis is going to actually lead to a treatment for the underlying problem then it will be important. You must get treatment for your dry eyes, and Plaquinel is a disease-modifying drug that can slow the progression of your underlying autoimmune problem.

In the meantime, we get to confuse the heck out of our doctors!

Hugs, Sharon
Sharon, 57-YO female, Sjogren's, depression, sicca, ataxia, hard of hearing, neuropathy,  high BP, arthritis, more. Restasis, pilocarpine, Wellbutrin, Lexapro, oxygen, arthrotec, HRT, plaquinel.

Searching

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Re: Looking for input on biopsy results
« Reply #7 on: September 03, 2013, 01:38:42 PM »
Thanks so much for the input.  So it sounds like at least the biopsy was done properly.  I suppose the dry eyes could just be a result of the autonomic neuropathy.  I just wish I could figure out what's causing it because my life is pretty miserable with all the symptoms I experience on a daily basis.

Irishlass

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Re: Looking for input on biopsy results
« Reply #8 on: September 03, 2013, 02:14:21 PM »
Feeling your frustration Searching.

Hang in there & keep looking for answers!

((hugs))

anita

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Re: Looking for input on biopsy results
« Reply #9 on: September 03, 2013, 02:45:22 PM »
Dry eyes can, in fact, come from dysautonomia.  There are MANY causes of dysautonomia...from diabetes (even pre-diabetes), toxic neuropathy (certain antibiotics, for example), compression issues in the spine (neck or back), etc

Although it's nice to know what is causing a condition (and opens the door for the best possible treatment), sometimes you just need to focus on treatment of your symptoms.  It may be years before you learn the cause...so start treating NOW.  There are some medications for POTS, BP issues, GI motility, etc for dysautonomia.  It can be a very frustrating condition and sometimes not easy to treat...I have a severe case of it after 17 years of symptoms and treatment.   But there ARE options.  Try to find a neurologist with autonomic specialty...and a good cardiologist to help manage the POTS.

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

paisley62

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Re: Looking for input on biopsy results
« Reply #10 on: September 03, 2013, 05:07:44 PM »
Hi Searching,

Dry eyes can be caused by tens of medications, in addition to a lot of health conditions.

Please feel free to post here while you are trying to figure out what is wrong with you.  I had a terrible time getting diagnosed, as have many people here.  The correct diagnosis is needed to get proper treatment.

Just for an idea of how hard it is for many people to get diagnosed with auto immune illnesses, for one example:  the average time to a diagnosis of Lupus is five years, which means for a lot of the people it was longer than that. 

If you are sick and know it, don't listen to doctors who tell you that you are "just depressed', or you are just a hypochondriac, or anything else that is not true, which many of have encountered on the path to diagnosis.

  Keep asking questions, keep reading on the internet, and keep trying to get tested for conditions that you have symptoms of!  Eventually the truth will be revealed, the unknown is how long that might take.  I remember thinking "it is always darkest before the dawn" when I was beating my head against the brick wall of an unresponsive HMO in my quest to get a correct diagnosis. 

One key to getting diagnosed is to evaluate your symptoms the best that you can, as you are doing I think,  then try to gain access to the correct specialist to investigate your illness.  Then, if one doctor does not respond, or mocks you, or just ignores you such as not doing anything much and then continually saying 'come back in six months", then "come back in six months", then, etc...  move on and change doctors.  Changing doctors is difficult but necessary in many cases, and a trick to finding good doctors is getting word of mouth referrals from other patients - fancy medical credentials, in my experience, mean nothing.

 

 
« Last Edit: September 08, 2013, 03:35:07 AM by paisley62 »

Searching

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Re: Looking for input on biopsy results
« Reply #11 on: September 04, 2013, 04:20:03 PM »
Thanks, I'm not on any medication so the dry eye isn't from that.  I really appreciate all the input.  You seem like a very nice group.

lolo1979

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Re: Looking for input on biopsy results
« Reply #12 on: September 04, 2013, 04:38:50 PM »
Do you have dry mouth?

Searching

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Re: Looking for input on biopsy results
« Reply #13 on: September 06, 2013, 11:23:06 AM »
I don't know lolo.  I've started having problems swallowing and it does seem to be worse with foods that thick, dry, chewy so I do wonder if it could be dry mouth.  Also, my tongue always has teeth marks around the border which is weird.  The other really odd thing is I no longer produce ear wax, none, ever (and I used to).  Is that a SS symptom?