lip biopsy

[Bemment]

I had a lip biopsy 2 weeks ago , to test for Sjogren’s ,but I am regretting it so much my bottom lip is half numb and tingling and I have a huge lump where they took the biopsy from I’ve been to my doctor and she’s given me antibiotics but that was 5 days ago but it still feels awful , I am feeling so anxious because I have so many other things wrong with me I just don’t need anything else , has anyone one else experienced this and did the numbness etc get better?

[A14VEJ]

I also had a lip biopsy 11 months ago the side where they did the biopsy is numb. I have phoned and sponen to maxofacial several times about it & they just say give it it.

[Bemment in reply to A14VEJ]

Thank you for your reply, I am really worried that my lip will stay numb , I spoke to the oral consultant and he said give it 6 months , but I am really worried I didn’t want it done but the consultation Persuaded me and he said it would be fine he never mentioned the risks so I feel angry about it.did you get a positive result?

[LindyK]

Yes, I had one several years ago and still have the lump and some numbness where it was done. I regret having undergone one as well. And what’s frustrating, the lip biopsy is not even that reliable of a test. A negative finding I have since learned does not rule out Sjogren’s. My result was negative; I have the classic symptoms of Sjogren’s.

False negative results may occur due to problems with the biopsy sample, the reading of the sample, or an inadequate number of representative glands. Early in the disease, inflammation may not have developed into clusters of cells that qualify as foci. Late in the disease, atrophy and scarring may predominate. The focus score may drop to < 1 as the disease progresses.

[Bemment in reply to LindyK]

thank you for your reply , I’m sorry that you still have a numb lip , and a lump . I think people should be made more aware of the risks, but I felt pressured into having it done. Do you get any help with your symptoms , after testing negative , I’m finding it so frustrating my blood tests came back ok yet i feel terrible fatigue very dry eyes , Alopecia areata and loads more things, but if this test comes back negative which I am now suspecting, what then !😫

[LindyK in reply to Bemment]

Many with Sjogren’s don’t test positive for the antibodies. My ANA score of 1:320 speckled pattern along with my classic symptoms points to Sjogren’s. I take hydroxychloriquine but I’m not sure it helps. Currently I don’t have a rheumatologist because there are not good ones in the town I live in. I’m not sure what to do either. I will say that my ophthalmologist catheterized all four of my tear ducts which helped my dry eyes more than anything else. I use xylimelts in my mouth at night for dry mouth. It would be nice to have a competent rheumatologist but they are very hard to find. I’m so sorry about your situation too and that you felt pressured to have the lip biopsy. I did too. It’s natural to want answers and validation.

[Bemment in reply to LindyK]

thank you for your reply, the Rheumatologist I have seen was horrible , I first saw him in 2020 and he actually said that he could tell there was nothing wrong with me by looking at me . 😠 ,Which I was totally shocked at because I have multiple health problems , he dismissed me and said have a blood test for iron deficiency!

I went back to my doctors and asked for a 2nd opinion , and after nearly two years wait I had an appointment but when I went in it was the same man😫

But that time I was armed with all the multiple medical letters from different departments and also when I had a blood clot in my lungs , so he couldn’t dispute the evidence , but if my biopsy is negative I don’t know what next , I get the results on 22nd . But my good news is that my lip isn’t numb and tingling anymore which is a major relief as I was super anxious about that ,but there’s a big lump inside but at least it doesn’t hurt . I guess I’ll just have to keep plodding on as I always do 😩

[LindyK in reply to Bemment]

I am so sorry you ended up with an uncaring know-it-all a$$hat too, and twice! I have multiple health problems as well. I’m so happy your lip doesn’t hurt anymore. Best wishes to you.

[jeniwall]

I had a lip biopsy in over 30 years ago. I was very alarmed that my lip stayed so numb, it took several months to feel better and I still had "phantom" sensations after that. Evevtually it did recover but it is a trauma to that area, I don't think they give you enough information before you have it done, this can be said about many procedures! My friend had a biopsy on her tongue last week, they told it would be like having a mouth ulcer, obviously not! She has been in severe pain for several days.