Should I Get A Lip Biopsy?

[HopeSprings]

I saw a Rheumatologist to see about Sjogrens or other possible autoimmune cause for small fiber neuropathy and POTS. I test negative for Sjogrens antibodies, but he said something like 20% of the time a lip biopsy will show positive. He thinks it's worth doing because of leg biopsy and Schirmer test results. I'll probably do it because I'm desperate for an answer, but my inner self is saying.. what are you crazy?...remove salivary glands? Chances are it will be negative. What's your unbiased opinion - does it seem like a reasonable next move? And for anyone who has had it done, can you tell me specifics about the procedure? Thanks.

[Katybug]

Hey, Naomi! I really relate to this question....I am about to start tracking down more answers with a endo, rheumy, and hematologist for thyroid, EDS, and mast cell questions. There is a part of me that is really tired of the docs, the long explanations, and the poking and prodding. BUT, then I think about what I want my life to look like and this isn't it. And I know to change it, I have to find better answers.

So, I guess what I'm saying is...I think you should go for it. We have to systematically eliminate what we do and don't have to get to the answers that are going to help us. And, it sounds like you have a reasonably captive audience with this particular doctor who is willing to run the test. If you put it off and find out in 2 years that you really do have Sjorgren's, how will you feel?

Good luck and good thoughts to you.

Katie

[lgtaylor100]

I think you should have it also. I was told that the lip biopsy is the "gold standard" for diagnosing Sjogren's.

I had it done last year and it really was no big deal, no more painful than a dental procedure. With everything you've gone through so far, it is definitely worth getting the procedure for the possibility that this will be your answer.

Lynne

[jackiemxoxo]

I would say do it if you think it will help but not if you do not feel comfortable going through with it. I tested low positive for sjogren's a month ago and Im going to be tested again 3 months to see if it is still positive but i do not think it is the answer to all my problems. If anything, I know it is why I need eye drops and do not sweat as much but thats about it. In my opinion, i dont think it causes a lot of the big symptoms of dysautonomia because it is just attacking moisture producing glands. If you are having severe dry mouth or eyes though then it might be worth it.. I would find out what they would do to treat it first before going through that procedure just for a diagnosis.

[juliegee]

I'm with Jackie on this one. Ask yourself HOW this could potentially change your treatment. If it means adding eye drops or something equally as benign- why not just give them a whirl and see if they help. IF it means a change to your med regimen that could have possible systemic implications- go for it.

I love open-minded, experienced (aka old) docs, who will run empirical trials. So many young (less experienced) docs are so focused on testing that they forget to look at the bigger picture.

Let us know what you decide

[julieph85]

I have sjogren's anitbodies, my rheumy said it is secondary to my RA. Is there a link between sjogren's and dysautonomia? No doc has ever told me that before....I should add my sjogrens antibodies are low positive so it's not very active. My dysautonomia is very active so i find it hard to think the dysautonomia is related to the sjogrens.Interesting note- I never had positive sjogrens antibodies till i had the dysautonomia. I also never had a positive ANA til i had the the dysautonomia and when my sypmtoms subsided last year my ANA became negative again.... very interesting!

[HopeSprings]

Here's the deal. I met another POTS patient (over the internet) with small fiber neuropathy on the hunt for a cause. She saw a Dr. at Cleveland Clinic who thought it might be Sjogrens. She tested negative in blood work, but had a positive lip biopsy. This is my understanding... Small fiber neuropathy likely includes autonomic nerves - damage to autonomic nerves could be causing the dysautonomia symptoms (POTS). Sjogrens can be more than dry eyes, dry mouth - it can damage the nerves. There's a subset of patients that have more neurologic symptoms. The woman I talked to didn't even have dry eye or dry mouth symptoms. She's being treated with IVIG, so a Sjogrens diagnosis could change or focus the treatment. When I got the positive biopsy results for SFN, I looked at what things can cause SFN and Sjogrens was one. My eyes are extremely dry and once I tested very positive on the Schirmers test, it really made me wonder. It's probably a longshot, but so were many of the things I've been tested for. I just wish this particular test wasn't so scary sounding.

Here are a few articles:

http://www.medlink.com/medlinkcontent.asp

http://jnnp.bmj.com/content/69/1/135.1.full

http://www.sjogrensworld.org/mandel.htm

http://www.ncbi.nlm.nih.gov/pubmed/16186536

http://www.ncbi.nlm.nih.gov/pubmed/20943291

[HopeSprings]

P.S. If I'm mistaken about something or if anyone knows anything more about this topic, please share.

[juliegee]

Now THAT's what I'm talking about. You just built the perfect case for a lip biopsy Be sure and let us know what it reveals!