Debating lip biopsy, need advice, my recent labs and story are inside..please help

First go to your eye doctor and get your eyes checked, they can insert a tiny paper in your eye to check tears and should be able to tell you if you possibly have sjogrens. Then go ask your dentist if your mouth is dry enough for sjogrens. I had the lip biopsy back a few years ago and it went bad for me, plus the lab said it was inflammed just not inflammed enough and a lot of times in the early stages of sjogrens this can be a judgemental call, however my rheumy can and said I had indeed sjogrens, and I will never get this test ever again for me the discomfort was very bad, it hurts. Ice helps should you decide to get this test done, I would recommed you get someone to drive you on this date. Others will come by and say this wasn't so bad, but my doc had to numb me up twice and he took a lot, for 2 testing labs.
If your RA doctor is willing to treat you for sjogrens after getting your eye doctors report then I'd just skip the biopsy.
Also go to your pcp and get the bloodwork for the HLA-B27, as this is also an inflammatory marker, but for men, not women. ( I'm a gal).
Many well wishes and keep us posted, will be thinking of you.

Hello, thank you both for the replies. I keep seeing different opinions rearding the biopsy, some say it was a breeze and healed quick, others say it was a nightmare and have lasting numbness (not sure I could hande that with everything else going on)... I am wondering if it strictly hato do with the skill ofhe surgeon performing the procedure?

Regrding my RA doc (this is my 4th I've seen this year and supposedly a specialist in Sjogrens, works with some Boston support group). She says I just dont fit the bill given all the totally negative lab work I listed above (and doesnt want to treat because she thinks it would set things in the wrong direction), she said all of her Sjogrens patients have atleast some marker (if not specific for SJogrens atleast an autoimmune or inflammation marker) of which I have none. It wasnt her idea to get the biopsy, it was mine, so she sent me to Tufts Dental School and they agreed to have their oral surgeon do it to rule out Sjogrens.

I guess I am trying to decide whether to do it or not considering all the negative relevant labs, the fact I am a young male, and all my other symptoms (some seem to ft into Sjogrens, others dont). Everything kind of happened over the matter of a month last August 11', started feeling very sick with GI issues, lightheadedness, sporadic rash on stomach, cold hands/feet, low body temp, a feeling of jell-o-y/tight muscles in my legs (NO joint pain or inflammation tho), among other random things...I had the dry eyes prior to this, ever since my Lasik surgery.

I think I'd like to exhaust allother potential Sjogrens tests prior to getting the biopsy, some I've read about but havent had include:

The HLA-B27 you mentioned above
Schirmer Test
Rose Bengal Score
Anti-m3 muscarinic Ab
Ultrasound of salivary glands
Saliva Flow Collection [sialometry] (look at amount and quality)
Stimulated secretion of SM/SL saliva

Any others that I've missed? Given the lack of any lab evidence or any signs of inflammation do you think it would be wise to exhaust these other tests prior to biopsy?

I will def keep you posted, I've been feeling bad for about a year now out of now where and was 100% healthy, in the best shape of my life prior, so i am desperate for a diagnosis, and lots of stuff has already been ruled out from amyloidosis, MGUS, various cancers etc.

I was hoping my current Sjogrens expert would be my go to person to either rule it out or diagnose it, but it sounds like Imay have to find another. Any thoughts on where I might find some suggestions for Boston area docs (opthamologists, dental, Rhuem, etc.) that are Sjogrens specialists and would be able/willing to order and interprete the above tests correctly? is there a place to post for such things on this forum?

Also, if I have all the above tests come back negative, in addition to all the other negatives I've had, and the fact that I am in a minority Sjogrens group being a young male, would it then be safe to say that is not whats causing my problems? and move on to other possibilites.

Hi, I will def. give those things a try, I will prob. hold off on the biopsy anyway unil I have the other less invasive Sjogrens realted tests performed.

Regarding the GI issues, its mainly daily low level naseua, sporadic bloating an gas, lck of appetite, normal bowel movements, no vomitting, no stomach pain at all, cant seem to gain much weight no matter what I eat.

Ive had a huge GI workup, 2 SIBO breath tests, lactose and fructose breath tests, 1 colonoscopy, 3 endoscopies, 2 gastric emptying studies, 2 small bowel follow throughs, abdominal/pelvis CT scan w/ contrast, various biopsies, genetic testing for IBD and celiac, and just recently had the 'smart pill' procdure done at Mass General (waiting on the results of that)... so far all was pretty normal, first SIBO test showed possible bacterial overgrowth, second did not.

Chrons, Colitis, and Celiac have all been totally ruled out, and I dont have any constiption or diar, so IBS isnt likely... I continue to see GI so hoefully something will happen with that.

A few docs have suggested lyme disease as the issue, given my symptoms, rash, onset time, etc.

Boy, reading this made me think you were talking about me! I've been dealing with stuff for over 4 years, seen countless specialists and had countless tests done. I went to Stanford to see a Rheumatologist who did an exam and some blood work which was negative. He didn't feel a biopsy was necessary. ThevENT doc here still felt he should do one so did a lip biopsy in the office. It was uncomfortable but not that bad. I will say though that that area of my lip is still half numb. Another ENT doc I saw did an endoscopy with biopsies and a parotid gland biopsy, all negative for Sjorgens. Had no problems from that and can't even see it. Then I started all the GI issues and all those tests, CT scans, MRI, endoscopy, colonoscopy, stool, etc. this doc thinks I have IBS. Given Levsin then Dicyclomine, Omeorazole. Ended up at the ER earlier this week with an irregular heart beat. Doc there said it was the meds and to stop them so now I have nothing to take for my stomach and nausea. Well, I have Zofran but can't use that all the time. Just had the breath test done and they did find bacterial overgrowth in my small bowel so he prescribed Xifaxan. My Lord!! Luckily he had samples to give me, for 10 days supply, it would have been $1,400.00!!!! So, just took the second pill and waiting to see how I tolerate this. All these meds just make my dry mouth and throat worse. Oh, a few weeks ago, I started dealing with thick phlegm I am always hacking up. I started having night sweats a couple of years ago and I am way past menopause. I wake up every morning feeling clammy and sick to my stomach. Like my dentist, who I have to see regularly now due to major dental issues from the dry mouth, said I am stuck between the dental community and the ENT dic's and they don't work together. Doing some research, there is a clinic at UCSF that also deals with Sjorgens. I did a self referral and he did a thorough exam and actually measured my saliva over a 10 min period. Found out my parotid glands really aten't producing saliva. He didn't think I have Sjorgens but referred me to the clinic. I didn't go because I really hesitate taking any drugs and it is really too far and incontinent for me to have to travel that far.
I did have a couple of high results for Epstein Barre and Herpes but all the docs say that is normal. Something is going on with a lot of us with the same symptoms and no diagnosis. They ripen these tests looking for something and all they tell me is I have degeneration in my back and neck, Osteoporosus. All this just ruins your quality if life.
Hope you can get some answers. I am on the Medhelp boards sometimes too.
Wish someone could figure out the cause for the dry mouth and throat. Depressing.

I had the lip biopsy 2 weeks ago. Post surgery I was prescribed a mouthwash and tablets from a very good homeopath. I did not find the procedure too difficult and discomfort not pain was experienced the sensation is back to normal so just waiting on results.
8 sutures all dissolved with no problems.
Good luck to anyone else.