Lip biopsy 9 hours ago. Not doing too badly. Just wondering what to expect next.

[HopefulCC]

Seem to have all the classic symptoms of SS. Bloods showed ANA detected but further bloods were inconclusive???? Got referral to rhuemmy. Don't think she's taking me seriously - it must be all in your head, after all you suffer from depression - of course she hasn't said this and perhaps I'm being too sensitive but it's certainly the impression I'm getting. Asked her what was required to get definite diagnosis, hence today's lip biopsy. Oral surgeon said mouth was extremely dry and pattern of tooth decay indicated it had been dry for LONG time. Just like everyone else I don't want a positive diagnosis of Sjogrens however do need to know what's going on so know how to treat. Want to thank everyone for contributing to this blog. It has been super informative/helpful and I feel less alone.

Re post biopsy can anyone tell me best foods/liquids to eat. So far have just had yoghurt and used salt water rinse. Not going to work tomorrow, still too uncomfortable and also can't speak too well. Having stitches out on Monday morning. Any suggestions of whether I should go to work after removal of stitches, is it also painful? Feel I should go if I can as have had over a week off due to massive fatigue and painful joints. Any feedback greatly appreciated and thanks so much for providing this space to come to. Hugs to all, CC

[Beverly]

sjogrens is very hard to diagnosed because it mimics so many other diseases and you can have sjogrens 6,8 or 10 years before you get a diagnoses, to get help you need to get an appointment with an Integrative Medicine GP they do completely different blood tests to a normal GP my health has improved 100% since I have seen my IM GP, hopes this helps.

[DslyM65 in reply to Beverly]

Hi Beverly I live on the Sunshine Coast. Do you know of an Integrative Medicine GP up this way?

[DJEUSA]

how much did they cut inside you lip ? I had a 1/4 slit made and out popped the little glands attacked by white lymphocytes cells - they pulled 5 off the inner lip and then stitched with dissolving stitches. Was a bit annoying feeling but I had no pain. But then again I was on prednisone already so maybe it masked it all. Waited 3 long weeks and they came in at a class 3+ reading - sure for Sjogrens. I was mis DX'd for 11 years with systemic Lupus ( SLE ) prior to the lip biopsy. I moved and had a new Rheumy which took three years for him to grow suspicious that my bloods were clean for Anti ds DNA which had gone positive - as the 1st Rheumy said. At the time of the SLE Dx I had the same symptoms as now - seems many auto immune diseases behave similarly. Back in 1996 they claimed that a Anti ds DNA gave off NO false positives and now they say it is possible. And if the Anti ds DNA comes positive another test should be done immediately at an totally different independent lab. The oddest thing of all this is that my SLE test and my Sjogrens biopsy were sent to the very same lab 11 years apart. The biggest problem was that my 1st Rheumy was so conservative in treatment he did not follow protocol for either SLE or Sjogrens treatment and I did not know a thing of what he should should have done until I started reading so many books and when I questioned him he ignored and patronized me. The important part is that my present Rheumy found out and now I am on a study for RA which is helping the Sjogrens also.

eventually the drug ( Xeljanz ) is going to be used for other things also. It is an immune suppressant but in tablet so there is no infusion or injectable involved. I sure hope your lip heals up soon for you. How long until you get the results ? Diane

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[Beverly]

no I don't know of any Integrative medicine doctors up there we have one at Mullumbimby and he does Skype consultations, Oscar 66843531

[Exhausted101]

For what its worth (I had a lip biopsy a couple of years back) eat whatever you like but make the amounts small so that you can get it in your mouth without having to stretch your lip too much and maybe softer foods, not to dry and rough! I had very few problems. I used a softer toothbrush to try and avoid bumping my lip too much. My stitches were soluble which was just as well as I didn't have an appt back for weeks.

the experience was nowhere near as bad as I thought it would be - except for the fact that I still have a numb bit on my lip - feels like I've just come out of the dentists!