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Old 01-21-2012, 07:36 AM   #1
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Lip Biopsy What Can I Expect?

I have lip biopsy scheduled for next Tuesday. Has anyone had one? What can I expect? How big is the incision? Alot of pain afterwards? Going through the diagnosis process. Neuro isn't ruling out MS or Parkinsons but sending me to Baltimore for further testing. Rheumotologist is ordering a lip biopsy because ANA and SSB positive. Symptoms are neurological though??? Tremors, muscle waste really bad, right eye is drooping etc.... I didn't think Sjogrens could cause such horrible neurological problems. Multiple Lesions on my brain mri. No RA factor. ANA is Homogeneous which suggests Lupus. I don't know. Going crazy trying to get a diagnosis. Perhaps overlapping disease. Can you have Sjogrens and MS?

 
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Old 03-11-2012, 08:10 PM   #2
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Re: Lip Biopsy What Can I Expect?

For those facing this procedure, it's not really a lip biopsy, it's a Salivary Gland Biopsy. The ENT (who usually performs it but a rheumatologist can do it too) must take at least a 4mm x 4mm sample from the inside of your mouth below your lower lip. That is where the salivary glands are located. You'll get a local anesthetic and won't feel much. You will have stitches. After the anesthetic wears off, I won't lie to you, it's going to hurt. A lot. It hurts for about a week and then it goes away. That's what to expect. But it's also the ONLY real test for Sicca Syndrome and Sjogrens.

 
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Old 03-14-2012, 04:13 AM   #3
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Re: Lip Biopsy What Can I Expect?

personally....my internist didn't want to put me through that kind of test. she is satisfied with my ana, with a high titre and speckled pattern and ssra, that i have primary sjogrens. i've had the dry eyes for many years and due to my symptoms, she is pretty positive of her diagnosis. i'm suspecting you may have secondary sjogrens which can mimic several autoimmune disorders. but...i'm not a doctor and i'm sure you will find out exactly what it is soon. best of luck and let me know what happens.

 
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Old 03-14-2012, 08:42 AM   #4
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Re: Lip Biopsy What Can I Expect?

BooBoo, the question the OP asked was "Lip Biopsy What Can I Expect?". The Salivary Gland Biopsy is the only test that will confirm Sjogren's 100%. Most Sjogrens patients have negative ANA tests with no Titers. I had a positive ANA but because it was so near normal, I wasn't going to get a diagnosis without the salivary gland biopsy. And I really wanted a diagnosis. I had to know. It's great that your doctor did not want to put you through it, but how is your response relevant or helpful to the OP?

 
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Old 03-14-2012, 11:09 AM   #5
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Re: Lip Biopsy What Can I Expect?

for one thing chamade....the gland they biopsy is inside the lip, so i've heard many people refer to it as a lip biopsy. she has a positive ana and a positive ssb. primary sjogrens is usually just ssa, but some have the ssb too. but...with just ssb....then secondary sjogrens is suspected, which can mean that she may experience other disorders too. the gland biopsy is not the only test that can confirm sjogrens because like you said, a lot of people don't even have a positive ana and they are diagnosed with sjogrens from symptoms alone, or with the biopsy, since no other test can confirm it. trust me....i've researched the crap out of my disease. and...in answer to your question about how my response isn't relevant....i was also offering support, not just trying to force her into a test that may not be necessary. that's fine that you wanted to know, due to the fact that yours were negative...but her test results are all positive, so....the gland biopsy may not be necessary and like my doctor said...she didn't want to put me through it because with her medical experience, she is pretty positive of what i have. this board is not just for diagnosing peoples problems or telling them what to do or not to do. we're here for support and suggestions that we may have experienced ourselves. not to make comments about how other people perceive different circumstances.

 
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Old 12-19-2012, 12:18 PM   #6
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Re: Lip Biopsy What Can I Expect?

Quote:
Originally Posted by chame View Post
For those facing this procedure, it's not really a lip biopsy, it's a Salivary Gland Biopsy. The ENT (who usually performs it but a rheumatologist can do it too) must take at least a 4mm x 4mm sample from the inside of your mouth below your lower lip. That is where the salivary glands are located. You'll get a local anesthetic and won't feel much. You will have stitches. After the anesthetic wears off, I won't lie to you, it's going to hurt. A lot. It hurts for about a week and then it goes away. That's what to expect. But it's also the ONLY real test for Sicca Syndrome and Sjogrens.
Hi chame, I had a lip biopsy done for sjogrens but it doesn't seem in accordance with what literature says about the spot to remove these minor glands. Mine is closer to the corner of my mouth, below the lip, just slightly above the floor of th mouth. Is that an accurate spot? The rheumy curled her lower lip slightly down and showed me where it would be done, however, the ENT surgeon went far from there.

 
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Old 12-19-2012, 03:39 PM   #7
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Thumbs up Re: Lip Biopsy What Can I Expect?

Hi Sky,

Well, like I said, mine was a lot of pain for a not so great outcome, and I probably would not have an ENT do it again. My ENT did it. It was well belowthe lip, probably across from the bottom of my lower canines. The required sample size is 4mm x 4mm. By the time it got to San Antonio, it had degraded and was only 3mm x 3mm - so the ENT either didn't know how to measure in millimeters, or erred on the side of less is more. So while I don't have an "official" diagnosis due to the size issue, the presence of lymphocytes made the diagnosis easy for the ENT and rheumatologist. Basically, you have salivary glands everywhere in your mouth, the lower lip is probably the easiest to access and lease painful. If I were to have to have another one, I would have my Rheumatologist do it, and make sure he knew in advance what size sample he needed to take and how many times he had done it before. Hope that helps

QUOTE=skyisfalling;5106381]Hi chame, I had a lip biopsy done for sjogrens but it doesn't seem in accordance with what literature says about the spot to remove these minor glands. Mine is closer to the corner of my mouth, below the lip, just slightly above the floor of th mouth. Is that an accurate spot? The rheumy curled her lower lip slightly down and showed me where it would be done, however, the ENT surgeon went far from there.[/QUOTE]

 
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Old 12-19-2012, 05:01 PM   #8
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Re: Lip Biopsy What Can I Expect?

Hey Chame, thanks for replying. Ya, mine was really painful as well. I'm now left with a hard lump at the incision. Procedure was done early oct/2012. The ENT was a bit clumsy, I thought he was going to bust my top teeth with his instruments as he kept accidently banging them. The rheumy said the results showed mild lymphocytic infiltration consistent with sjogren's in a clinical setting. She said she was expecting clusters, as other conditions can cause mild infiltration.

So, with dry mouth and dry eyes, skin, hair, nose, ears, fatigue...I guess I have Sjogren's. She didn't seem very happy with the results saying there wasn't much documented. I know there is a criteria such as a focal score, pattern, etc....Maybe the pathologist wasn't experienced in analyzing the specimens.

I'm thinking of having it sent to another lab as I believe they keep the slides for up to a year. This is so frustrating. I hate, "well it seems you have it". Being seronegative doesn't help I guess. There are studies where perfectly healthy people have some lymphocytes kicking around in the salivary glands, so I guess it boils down to focal score and pattern, which wasn't mentioned.
I've been to 4 rheumys so far. They all ran complete blood panels. (mctd, lupus, sjogren's ,scleroderma etc..)
Rheumy #1 seronegative
Rheumy #2 postive ana titre 1:160 speckled pattern (she didn't even call me for follow up, I requested my results and moved on to the next Rheumy)
Rheumy #3 seronegative
Rheumy #4 ( the one I'm with now who ordered the lip biopsy) seronegative twice
Rheumy # 1 seronegative

 
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Old 12-19-2012, 05:03 PM   #9
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Question Re: Lip Biopsy What Can I Expect?

Hey Chame, thanks for replying. Ya, mine was really painful as well. I'm now left with a hard lump at the incision. Procedure was done early oct/2012. The ENT was a bit clumsy, I thought he was going to bust my top teeth with his instruments as he kept accidently banging them. The rheumy said the results showed mild lymphocytic infiltration consistent with sjogren's in a clinical setting. She said she was expecting clusters, as other conditions can cause mild infiltration.

So, with dry mouth and dry eyes, skin, hair, nose, ears, fatigue...I guess I have Sjogren's. She didn't seem very happy with the results saying there wasn't much documented. I know there is a criteria such as a focal score, pattern, etc....Maybe the pathologist wasn't experienced in analyzing the specimens.

I'm thinking of having it sent to another lab as I believe they keep the slides for up to a year. This is so frustrating. I hate, "well it seems you have it". Being seronegative doesn't help I guess. There are studies where perfectly healthy people have some lymphocytes kicking around in the salivary glands, so I guess it boils down to focal score and pattern, which wasn't mentioned.
I've been to 4 rheumys so far. They all ran complete blood panels. (mctd, lupus, sjogren's ,scleroderma etc..)
Rheumy #1 seronegative
Rheumy #2 postive ana titre 1:160 speckled pattern (she didn't even call me for follow up, I requested my results and moved on to the next Rheumy)
Rheumy #3 seronegative
Rheumy #4 ( the one I'm with now who ordered the lip biopsy) seronegative twice
Rheumy # 1 seronegative

 
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Old 12-19-2012, 06:54 PM   #10
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Smile Re: Lip Biopsy What Can I Expect?

Hi Sky,

The lump will go away. That's the good news I promise, I thought I was stuck with that too. If you have lymphocytes in the biopsy, dry eyes, dry mouth, hoarseness, etc., it's considered "Sicca Syndrome" which is, basically, undiagnosed Sjogrens. The Fatigue is extremely difficult. I've been taking Adderall 2x a day or once a day depending on how hard it is to get up in the morning.

The specimen must be 4mm x 4mm - anything less will reject a Sjogrens Diagnosis due to the criteria. You don't get sparse lymphocytic infiltrates unless there is inflammation. But there is medication you can take for the dry mouth and throat, I don't know where I'd be without it. I had plugs put in my tear ducts for my eyes, so I didn't have to take Restasis which I did not like at all. The plugs were great! I didn't feel them, I still don't feel them, and for now, I very seldom have to deal with dry eyes. I find the dry mouth and the dry mouth dreams to be the worst. The pain is also very hard, but if you're not having joint pain, consider yourself very lucky! I had a brain MRI today, my symptoms of something else going on are progressing, I'm sure it's due to stress. I'm trying very hard to remove stress. I'll probably have to devise my own method since I can't find a therapist I can relate to.

As far as titers, while my ANA remains 1:180 which is Abnormally high, my rheumatologist can't tell me what it means. It's been consistently 1:180 speckled and I had to ask for the lip biopsy. Yes, ENTs don't seem to be very good at it, but any way you look at it, it's painful. Now they want to do a nerve conduction study which I haven't felt like undergoing. I had one 20 years ago, I still remember the pain. My ENT flat out said it was Sjogrens, the Rheumatologist prefers to go with Sicca Syndrome but he's a by the book guy and the path report clearly says he sample was 3x3 and degraded. I'm surprised there were sparse infiltrates in a 3mm x 3mm sample. That's too tiny to see much an they sent it to UTSA for path. So knowing I'd have to get another SGB for an official dx, I'm okay with where I'm at. Ask for Evoxac if you don't have it yet. It's Utopia in a capsule for Sjogrens, eliminates dry mouth for hours! I take it 4 x a day. But I have to see a pain management specialist every month for meds and a neuro every 3 months for Adderall. I also took Plaquenil for awhile, but some more recent symptoms have me rethinking that, but stopping the Plaquenil didn't stop the tinnitus so I'll probably start taking it again. The downside is a peripheral vision test annually, no big deal.

The MRI today is supposed to be annual, but I haven't had one for a few years because my regular doctor has had personal stuff happen that's seriously altered his 'tude, and he's just not as thorough as he used to be. They look for demyelinating stuff. I expect this time they'll find the lesion threy found several years ago will either have gotten bigger or multiplied. *sigh* By the way, name's Lisa


Quote:
Originally Posted by skyisfalling View Post
Hey Chame, thanks for replying. Ya, mine was really painful as well. I'm now left with a hard lump at the incision. Procedure was done early oct/2012. The ENT was a bit clumsy, I thought he was going to bust my top teeth with his instruments as he kept accidently banging them. The rheumy said the results showed mild lymphocytic infiltration consistent with sjogren's in a clinical setting. She said she was expecting clusters, as other conditions can cause mild infiltration.

So, with dry mouth and dry eyes, skin, hair, nose, ears, fatigue...I guess I have Sjogren's. She didn't seem very happy with the results saying there wasn't much documented. I know there is a criteria such as a focal score, pattern, etc....Maybe the pathologist wasn't experienced in analyzing the specimens.

I'm thinking of having it sent to another lab as I believe they keep the slides for up to a year. This is so frustrating. I hate, "well it seems you have it". Being seronegative doesn't help I guess. There are studies where perfectly healthy people have some lymphocytes kicking around in the salivary glands, so I guess it boils down to focal score and pattern, which wasn't mentioned.
I've been to 4 rheumys so far. They all ran complete blood panels. (mctd, lupus, sjogren's ,scleroderma etc..)
Rheumy #1 seronegative
Rheumy #2 postive ana titre 1:160 speckled pattern (she didn't even call me for follow up, I requested my results and moved on to the next Rheumy)
Rheumy #3 seronegative
Rheumy #4 ( the one I'm with now who ordered the lip biopsy) seronegative twice
Rheumy # 1 seronegative

Last edited by chame; 12-19-2012 at 07:04 PM.

 
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Old 08-29-2013, 10:40 AM   #11
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Re: Lip Biopsy What Can I Expect?

I know I'm jumping in here months later - but how did the biopsy go? I just got results back from my oral path who said lab results showed no Sjogrens or Rheumatoid. Still I have severe dry mouth if I don't take pilocarine. She said Ican pursure the lower lip biopsy if I want, but she is satisfied with lab levels. From what I have read I don't think I want to do that to my mouth.

 
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