Author Topic: Your experience with the lip biopsy procedure  (Read 911 times)

Judes

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Re: Your experience with the lip biopsy procedure
« Reply #15 on: November 05, 2018, 02:19:35 PM »
Hey Blue, it really wasn't too bad, worst part was the shot. My lip is still numb though so I'm hoping it doesn't feel too bad when the shot wears off. I have 3 dissolvable stitches and she removed about 8 minor glands. Time will tell.

bclark18

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Re: Your experience with the lip biopsy procedure
« Reply #16 on: November 05, 2018, 05:44:06 PM »
i actually was diagnosed at 13 and i had 3 Biopsy's done none went bad just alot of pudding eating lol however some sjogrens tests dont always come back positive but this is the best way to get it done. if you rube your tongue against your lip you will feel bumps they just take out one of toughs lumps it was scary but helped us determine that it was in fact sjogrens

Deseree

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Re: Your experience with the lip biopsy procedure
« Reply #17 on: November 05, 2018, 05:53:41 PM »
bclark18, if you don't mind me asking, how long have you had Sjogren's since you were diagnosed?
30 year old female. Mildly positive ANA and RF. Positive markers on Early Sjogren's blood test. Negative Ss-A/Ss-B. Dry mouth, nose, throat, and eyes. Currently taking generic Evoxac.

Judes

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Re: Your experience with the lip biopsy procedure
« Reply #18 on: November 06, 2018, 06:41:38 AM »
Bclark I'm so sorry you've had to deal with this at such a young age. I hope you are managing things ok. I can't imagine having a lip biopsy three times, but if that's what it takes I will do it. I just want to know for sure. Is it normal for your lip to still be numb 24 hours later? My lip feels and looks like a small ballon and is still numb? Hoping the feeling comes back when the swelling subsided.

Judes

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Re: Your experience with the lip biopsy procedure
« Reply #19 on: November 13, 2018, 05:32:03 PM »
Well it took about 5 days to start getting feeling back in my lip, and today about 8 days later there is still a knot in my lip that is numb with some weird pulling feeling. I am hoping it will keep getting better, nothing I can't live with though.

I got my results tonight. I had a focus score equal to 2. ENT doc told me anything over 1 is indicative of Sjogrens. She said she is not the right doctor to make the diagnosis or explain it to me that it has to come from my rheumatologist, and also has to coincide with other positive tests like Schirmers.

I already had Schirmer test with results also indicative of Sjogrens of 0 and 2. So I'm thinking with those two tests being positive I will have a confirmed positive diagnosis when I see my rheumy next at the end of December.

I can't find much on the internet about the range of the focus score and it's meaning? Is 2 high? How high does it go, does anyone know? I went in not knowing what I wanted the results to show and I'm still not sure, it's all so overwhelming  and a lot to take in. I guess I wait to see what my rheumy makes of it all now.

MAT51

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Re: Your experience with the lip biopsy procedure
« Reply #20 on: November 16, 2018, 03:40:22 PM »
I think you need a foci cluster score of >50 in one salivary gland to meet the criteria so yes you do I believe. Mine was all 5 removed making it 100% but the rheum said he couldn’t recall last time he’d seen such a positive result so I’m guessing this means I’ve had it for a long time. Certainly feels very advanced to me but no one has said more than seronegative Sjögren’s.
Hashimoto's, seronegative RA, Primary Sjogren's, small fibre nld polyneuropathy, hypertension, IBS-C, GORD, BMS, highly allergic disposition!

Judes

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Re: Your experience with the lip biopsy procedure
« Reply #21 on: November 16, 2018, 04:10:30 PM »
Hi Mat, I am a little confused by the foci scoring. From all my research I believe a cluster of more than 50 infiltrates in 4 mm2 area = foci score of 1, so if my foci score is 2 does that mean I had twice that number in the same area? I am confused. Do you know what your foci score was? The highest foci score I've been able to find in any publications so far has been 3. I don't talk to my rheumy till the end of December and the ENT doctor said she is not an expert on it and couldn't explain it to me.

From all I can gather a foci score equal to or greater than 1 is positive. This is the best description I've been able to find so far... from:https://www.ncbi.nlm.nih.gov/pubmed/3473649 

"According to current agreements, the verification of SS should consider all three components of diagnostic relevance: focal sialadenitis, keratoconjunctivitis sicca and an associated disease. Focus score (the number of mononuclear cell infiltrates containing at least 50 inflammatory cells in a 4 mm2 glandular section) of greater than 1 is probably the single most important test result in the diagnosis of the oral component in SS. Without such quantitation mild, nonspecific inflammation is often falsely classified as focal sialadenitis suggesting an underlying SS. This was confirmed by a retrospective study of a slide library, which showed that most cases descriptively diagnosed as focal sialadenitis actually had focus scores of less than 1"

happylife

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Re: Your experience with the lip biopsy procedure
« Reply #22 on: November 16, 2018, 09:13:58 PM »
Hi Judes

What i have found from my research is that ACR2016 sjogren criteria is for identifying patients for research purposes. Sjogren is mostly a clinical diagnosis and only 50% of these clinically diagnosed patients will meet the ACR2016 criteria.

For e.g if a patient has inflammatory dry eyes + joints pain + daily fatigue + peripheral neuropathy....will not pass ACR2016, but most rhumetologists will diagnose this as sjogren.

Happylife.

Judes

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Re: Your experience with the lip biopsy procedure
« Reply #23 on: November 17, 2018, 08:39:04 AM »
Hi happylife,

I only know my rheumatologist would NOT diagnose me without a positive lip biopsy. Now that I have that, I am hoping when I see her at end of December she will confirm my diagnosis and now offer drugs that will help slow the progression. Without it, she would only treat my symptoms with Cevelimine, no steroids and no plaquenil, nothing else was offered other than telling me to see different doctors. And she made it seem like my nerve and muscle pains were in my head. So now maybe I can go down a different path, I still need to decide what I want to do, I am not sure what drugs I want to even try at this point, they all scare me.

rnathans

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Re: Your experience with the lip biopsy procedure
« Reply #24 on: November 18, 2018, 08:58:46 PM »
Sounds like you may need to find another doctor even with a positive lip biopsy. Your doctor is not taking your symptoms seriously.