Author Topic: Looking for input on biopsy results  (Read 767 times)

Searching

  • Guest
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.

anita

  • Hero Member
  • *****
  • Posts: 2211
Re: Looking for input on biopsy results
« Reply #1 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

  • Guest
Re: Looking for input on biopsy results
« Reply #2 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. 

paisley62

  • Guest
Re: Looking for input on biopsy results
« Reply #3 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

  • Hero Member
  • *****
  • Posts: 2716
  • Sharon,
Re: Looking for input on biopsy results
« Reply #4 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

  • Guest
Re: Looking for input on biopsy results
« Reply #5 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

  • Jr. Member
  • **
  • Posts: 77
Re: Looking for input on biopsy results
« Reply #6 on: September 03, 2013, 02:14:21 PM »
Feeling your frustration Searching.

Hang in there & keep looking for answers!

((hugs))

anita

  • Hero Member
  • *****
  • Posts: 2211
Re: Looking for input on biopsy results
« Reply #7 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

  • Guest
Re: Looking for input on biopsy results
« Reply #8 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

  • Guest
Re: Looking for input on biopsy results
« Reply #9 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

  • Sr. Member
  • ****
  • Posts: 331
Re: Looking for input on biopsy results
« Reply #10 on: September 04, 2013, 04:38:50 PM »
Do you have dry mouth?

Searching

  • Guest
Re: Looking for input on biopsy results
« Reply #11 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?