Results of lip biopsy

I could have written this post myself as I have had exactly the same experience!! I could not believe it when I was told my lip biopsy was inconclusive either and was told I have sicca symptoms not sjogrens. Like you I have every single symptom as well as central nervous system symptoms but apparently unless the lip biopsy is absolutely conclusive it will be called sicca, not sjogrens. To add insult to injury I have told every doctor I have seen during the past ten years about my excruciatingly painful, bleeding tongue and not one of them was interested so when I told my rheumatologist I have oral thrush she said "how do you know, have you had a swab taken"? She was one of the doctors who ignored me in the past. It can be so difficult when you have multiple symptoms to be truly listened to so I understand your frustration entirely.

Sorry that your lip biopsy was inconclusive. Perhaps the steroids have masked it as I’ve read that this can happen. Certainly when I was on DMARDs and then steroids my blood results showed negative for Rheumatoid Factor and ANA. But once I was fully clear of these my ANA came back a significantly  positive and only then did I agree to a lip biopsy - which was 100% positive in my case. 

And yet my dry eyes and mouth are only moderately dry compared to yours. But I was I misdiagnosed with RA 6 years ago when it presented as bilateral joint swelling and then it shifted to MS-like symptoms which have progressed. 

I do think that Sjögren’s is one of the most misunderstood autoimmune diseases. Most health professionals  assume mine must be mild because I don’t have corneal damage or rotten teeth. But I had both as a child and young adult so perhaps the Sicca is self limiting but I do have white matter of brain and numbness and pins and needles everywhere and my balance and energy levels are severely compromised so I try to explain that actually I think my Sjögren’s is rather severe. My rheumatologist and neurologist would probably support this but opticians and dentists and gastro  have no concept!

So I think I think it’s safest to assume that Sjögren’s, like Lupus, is a unique disease for each sufferer. 

When I started on steroid inhalers, no one told me nor did the fact sheet state then that one needed a vigorous rinse of the mouth after every use, followed by spitting out the rinse water. Gastroenterologist discovered thrush during my endoscopy. That was in the '90s & I've never gotten it again despite having had Sjogren's long before the thrush.

Here in the States GPs are not all that familiar with SS, internists a bit more so. Mine was first diagnosed by an ENT, and he was the 1st doc i told about the dry mouth & eyes. He sent me to a rheumo to confirm it. Early '90s. In this century, each of the 3 GPs I've had always start out with, "but how could anyone know you have SS when some of the meds you're on cause dryness?"

Well, duh! I wasn't on any of those meds when 1st diagnosed, nor for all my life before that. I don't know that any of this helps you except to say I'm not surprised when folks have complained for years about symptoms & docs don't respond. That same gastro who found my thrush spent the next 6 years ignoring my complaint that my bowel habits had changed hugely. Jerk! Classic signs of big gallbladder trouble.

Sigh.

I would just say that the US is well ahead of UK (I’m on Scotland) where Sjögren’s is concerned. Despite being lip biopsy positive we are excluded from all clinical trials here because only Ro posituve SS is taken seriously. It’s a total disgrace and one perpetuated by all the info given out by related UK charities. In the States you have Dr Julius Birnbaum at John Hopkins researching and treating lip biopsy+ patients for neuro Sjögren’s with IViG and Rituxan. Whereas here in UK it is becoming increasingly hard for rheumatologists to refer patients for lip biopsies. Hardly surprising many feel this invasive procedure is too risky if even highly positive patients, often the ones with neurological symptoms, are still ignored! 

I do think steroids might have signficantly skewed your results. But hopefully it won’t make too much difference to the way you’re treated regardless. 

I have not actually been diagnosed with SS but came here because I have many symptoms.  I have had a lip biopsy and a parotid gland biopsy done by two different ENT doctors, both negative.  I also started having numbness and burning in my feet, not diabetic. Finally sent to Stanford and punch biopsies were done. Was diagnosed with small fiber neuropathy, undetermined cause, of course!  Had to go to Stanford years ago for GI issues, somewhat resolved and try to control with meds.  I have suffered with dry mouth, and now throat, for years and deal with thick mucus daily. It is miserable!!  Just finished about $13,000 of dental work because my top teeth were loose. You can't wear a denture with dry mouth.  Take care of your teeth!  Get a prescription toothpaste for dry mouth from your dentist called Prevident.  Floss!!  Use the Biotene often.  Drink plenty of water.  I suffer from burning tongue at time also.  I have never tried the oral saliva meds and my ENT doc he doesn't see much success with them. I hesitate because I am sensitive to meds and because of the stomach issues.  Not sure where you are but UCSF has a Sjorgen's clinic.  I haven't been there but I may go.  I have seen umpteen doctors and had many tests done for various things, all inconclusive except that I have Osteoporosis bad and afraid to get the shots.  It is all very depressing feeling like crap all the time.  Good luck!