Lip biopsy results - any thoughts?

[Milly]

It's been quite some time since I've posted here but I finally decided to go ahead with the lip biopsy to see if I can clear up this whole diagnosis issue. The result unfortunately has left me no more sure than I was before. Here is just a summary of my blood work, symptoms and recent biopsy results.

Blood work
Mildly positive ANA (1:160) speckled pattern, ongoing low complement C3/C4, and positive ENA for another autoimmune disease I don't have any symptoms for (Jo-1), but no sjogren's specific antibodies.

Symptoms
I have dry eye with recurrent corneal erosions, which I've been lucky enough to have for nearly 10 years, that has been the worst part. Mildly dry mouth for 2 years. Last year I developed peripheral neuropathy which was no fun, to be honest I thought I was dying it was all so odd. Paresthesias, fasciculations and numbness occurred for a few months then slowly disappeared. At the same time I developed joint pain and mild swelling in my wrists, fingers and toes. The neuro symptoms and joint pain subsided and now only occur when I'm run down, but the dry eye persists. I saw a neurologist who told me this kind of thing is common in sjogren's patients.

Lip Biopsy (performed 19/4/17)
Final Comment
"While the features are insufficient for a diagnosis of sjogren's syndrome on histological features alone, this may represent a possible early lesion in the appropriate clinical and serological setting".

Microscopic Description
"Mild atophic changes within minor salivary glands
Mild inflammatory cell infiltrate comprising plasma cells and lymphocytes
Occasional small lymphoid aggregate cells are noted, 20-30 cells in size
A single larger periductal lymphoid aggregate, 50-100 cells is noted
Mild chronic sialadentitis".

The way I interpret this is that the biopsy is not conclusive unless paired with the clinical symptoms, which in my case support sjogren's.

Any ideas? right now I'm sitting at home nursing a swollen sore lip and wondering if I wasted my time having the biopsy done. By they way just in case anyone is wondering how I managed to get the biopsy report the next day, I just so happen to work in the same clinic I am a patient in

Thank you,
Milly

[irish]

Lip biopsies are going to be the death of us. To do or not to do. My guess is that your neurologist probably was the one to latch onto. With all the neuro symptoms you had going on along with the eye and dry mouth with mild results on the lip biopsy I would think that some doc might take a stab at a diagnosis. There are a lot of people running around with seronegative blood work who have Sjogrens and many are on this site. It takes a certain type of doc to make a diagnosis under these circumstances.

However, you have one autoimmune issue your stated plus some blood work that is indicative of some autoimmune issues. Therefore, the least the docs could do is to at least treat you symptomatically. That may be as good as it gets until you have more positive blood work. Actually, the docs might be doing you a favor because you do not have much autoimmune diagnoses on your health record which may be a good thing when it comes to health insurance.

I ran around with autoimmune issues for over 35 years before I got a diagnosis. It is frustrating but sometimes thats the way it is. I kept telling docs that I had autoimmune and they kept telling me it was in my head. I had considered the possibility that I had myasthenia gravis and then I got symptoms and had positive blood work and the doc told me the high blood work was because I had prematurely grey hair. Well guess what, 4 years later had sky high blood work and diagnosis of myasthenia gravis from a better doctor.

You may just have to be content with the treatment of your symptoms and eventually you may have some positive blood work. I wish I could make it all go away, but the path of autoimmune is filled with strange detours. Autoimmune disease is fickle and can drive us crazy. Acceptance is hard but it can save a lot of agony and stress as we wearily wait for the blood work to convert to positive. Good luck to you and keep us updated on how things are going. Irish

[Milly]

Hello Irish,

Thank you for your reply. Please excuse my brief response but I am just about to race out the door to work, and I shall be back later today. In the meantime I just had a thought, if the diagnostic criteria fore sjogrens on a lip biopsy is a collection of cells greater than 50 in a 4 by 4 focus area, then should my result not meet criteria? A question for my doc for sure, but wondering what you make of the noted periductal lymphotic cells  found on my report that are 50-100 in quantity?

Back later :-)

[irish]

I have no clue what the pathologist is getting at. One would think that the area was too small to get a good sample of salivary gland tissue, but it hard to know just what each pathologist or lab considers to be "normal".

I will add that not docs who do the lip biopsy are considered equal as it is a very tricky biopsy to do and it requires docs who do this procedure often. Once or twice a year, etc is not enough to be very proficient at the procedure.

It has been advised question the doctor about the frequency of lip biopsies that he does. Sort of scary but makes sense. Just another little story about biopsies. I had to have a muscle biopsy some years ago and the U of MN had one doctor who did all the muscle biopsies but he was out of town for several months. They said there was only one other doctor that they would use to do a muscle biopsy in the Mpls./St. Paul area and I had to wait quite a few weeks to get an appt. I guess muscle biopsies are also very tricky and take a lot of experience. One never knows what they get into sometimes. Life is very interesting. Good luck. Irish

[A Mom on Spin]

Milly ,

I'm certainly no pathologist, but I just went through the whole squishy lip biopsy results myself.

My guess is that because the collection of 50-100 cells was periductal it doesn't officially count in a Sjogren's diagnosis because it was near a duct and not connected to a gland.

I see in your signature line that you've been diagnosed with UCTD, which may be exactly the right diagnosis for you at this time.   Sometimes we have to just wait while our bodies and our crazy autoimmune processes decide where exactly it is they're going to settle.  The important  thing is to be watched for any additional Autoimmune processes that might show up and to receive treatment for the ones that are there.

Are you on placquenil?  All three of my daughters have been put on placquenil even though they don't have definitive diagnosises.

Liz

[Milly]

Hi Liz,

The periductal region is apparently where many of these cells can be found. I only know this after much extensive reading in the last few days, prior to this I had the same line of thinking as you did

I have some good news however, the rheumatologist is having my sample sent to the hospital he works at and is using it as a case study amongst 7 of his colleges, I feel rather special ha! He feels that the report written by the original pathologist is ambiguous and says something is going on, however is noncommittal in his description.

Meanwhile my lip is very numb and painful. I am worried that I may have some ongoing nerve damage as I have shooting pain branching off in two separate directions which when the pain killers wear off is quite disconcerting.

I agree with both you Irish, and Liz, it may be too early to tell and a wait and see approach is it for now. UCTD is still a diagnosis and my doctor is prepared to treat me although I have not started any meds as yet. I tried plaquenil but my stomach couldn't tolerate it (many bathroom trips). If I feel I need it I'm prepared to give it another shot. Right now the joint pain and neuropathy is intermittent enough to cope. My eyes have been the worst but my latest round of surgery seems to have righted the issue or recurrent corneal erosions which I am thankful for.

I shall keep you posted on the outcome of the second opinion of the biopsy, thank you.

Milly

[A Mom on Spin]

It's great that others are taking another look at your biopsy.  It's what we all would want. Right? 

As for the biopsy pain, I had mine done three weeks ago and only experienced numbness and some discomfort.   Something like a " fat lip" kind of feeling.  If you've ever been prone to cold sores, that's exactly how it still feels to me, but no real pain. 

As for the placquenil, the same happened to me in the beginning but I waited it out and it eventually went away.  As for the good it does me?  I honestly don't know but two of my daughters would tell you it's helping.  Seems to depend on the individual. 

Good luck, and keep us posted.

Liz

[Milly]

Hi Liz,

Sorry I forgot to ask how you went with your biopsy. Can I ask, how long did you feel the numbness and mild discomfort? Also I notice you have the sjogren's antibodies, so what made you decide to go ahead with the biopsy if you had a formal diagnosis?

The pain in my lip is along the stitch line, and there is a long hard lump which the doctor says is a haematoma and we'll need to keep an eye on it. The pain I have is in two areas and of two types: firstly it runs along the stitch line and when I try to eat and chew normally it is so painful it brings tears to my eyes. To get around this I've been having mostly soft type foods that don't require much chewing. The second type of pain is nerve type pain. I feel it along the jaw line on the side the biopsy was done as well as the roof of my mouth, also on the same side. At first I thought it was just TMJ due to holding my jaw in a strange position due to the numbness, and now I realise there is a small hard palpable lump on that jaw line that has come up. If i press on it I feel shooting nerve pain to the areas I mentioned. I'm really hoping that this is all related to the haematoma and will settle once the hard lump clears, which could be pressing on the nerve.

I'm sorry to hear that you children also suffer from autoimmune issues. I suspect one of mine will too, in fact she is 7 and has a positive ANA, which I know can mean nothing but given her young age, and some dry eye and joint pains that come and go I wonder what will come of it. My mother who lives in Vienna (I am in Australia) also has dry eyes and severe dry mouth, joint pain and takes lyrica for pain. She is seronegative and is too scared to have the lip biopsy, especially now as I have been sending her some pics of mine! Her joint pain is what I would call severe, she wakes from pain in sweats and cannot live a normal life. I really hope I don't head that way.

I will give the plaquenil a go again, it is reassuring to hear that you found the side effects settled. I know it doesn't help dryness and can help with fatigue and pain etc. which I manage well at this point. I have regular fevers but those too don't seem to bother me much .

As soon as I hear about the biopsy I will let you know, whatever the outcome.

Milly

[A Mom on Spin]

Milly,

If you go back on this board just a page or two, you'll find the thread about my own lip biopsy I started in mid-April.

As for my daughters, my middle daughter has had a diagnosis of a "lupus like" illness since she was 11.  She is now 26 and coping and living well.  My youngest daughter is now 25 and has been diagnosed with UCTD (leaning towards lupus). Both are sero-positive.  My oldest is sero-negative but has a diagnosis of spondyloarthritis.  It was their illnesses which led me to the rheumatologist at age 50.

Liz