Is an oral surgeon helpful for diagnosis?

[LilliaT]

Has anyone found an oral and maxillofacial surgeon to be helpful in diagnosing Sjogren's, or at least in assessing whether there's an issue with saliva flow?  I have already had a lip biopsy (negative) and am at a loss as to what to do next. 

After a few months where I obsessively tried to figure out what was wrong with me (only to receive mostly negative test results), I spent several weeks just trying not to worry about things.  The worry and anxiety had become so exhausting and all-consuming, and I was desperate for a break.  I had had blood tests (slightly positive ANA, negative SSA/SSB) and had gotten a lip biopsy which turned out to be negative -- which the ENT and rheumatologist both assured me meant I didn't have Sjogren's.  Although I know a negative lip biopsy isn't dispositive, I wanted so much to believe them and to be able to stop panicking. 

So I tried to convince myself that there was nothing really wrong with me.  I thought that maybe the dry eyes really were just allergies (as the eye doctor had suggested), or was solely a result of having had LASIK many years ago.  As for the dry mouth, a dental hygienist told me that she'd had problems with dry mouth and that it turned out to be related to an MTHFR mutation -- and that, once that was addressed, her symptoms gradually went away.  Because I had tested positive for the MTHFR mutation too, I clung to the hope that maybe my issues could be explained and cured too.  (In the back of my mind, I knew this was unlikely.  Among other things, she had other symptoms that I didn't have -- metallic taste in mouth, etc. -- and her MTHFR mutation was homozygous while mine was heterozygous and thus less likely to cause problems.)  So for several weeks I just sucked on xylitol mints and used eyedrops and otherwise pretended that everything was manageable.

It was a nice several weeks.  But a few days ago, the dry eyes and dry mouth suddenly got worse again.  (I guess they are better at times and noticeably worse at others, and I had been going through an easier stretch.)  The dryness in my mouth is so insistent; I constantly feel parched.  I can work up some saliva in the back of my mouth with effort, but the insides of my lips (which are always the driest parts) and the outsides of my teeth/gums are dry and sticky.   My eyes, too, are drier (so that I need to wake up at night to put in eyedrops).  But it is the dry mouth that is most affecting my life.

Although I've seen an ENT and a rheumatologist, neither assessed whether I was producing normal saliva (beyond taking a quick glance at my tongue).  I've read online about salivary flow tests that some doctors do, and I wonder whether these would be useful and whether an oral surgeon would do them.  Or if anyone has any other suggestions for other steps to take, I would be really grateful.

[Wal]

I'm in same boat. Scheduled my first Rheum appt in October. My ENT did a saliva flow test. My saliva was mildly low but did not meet sjogrens criteria. I saw an oral surgeon yesterday for TMJ issues. He listened to my long list of complaints and mentioned autoimmune. He says it's not normal for a person of my age to have all of these joint, dry mouth and dry eye symptoms. He gave me no definitive answers but seemed to be suggesting that my symptoms seemed autoimmune in nature.

[keelton]

I am wondering the same thing.  I would like a salivary flow test or some sort of diagnostics of the salivary glad besides the biopsy.  I have been to ENT. Dentist. Rheumatologist. And oral surgeon .  All just look in my mouth and say it doesn't look to dry!  I want actual testing.  Who does this?  It seems like everyone else is getting this from there doctor. 

[mike]

Oral Medicine Specialists typically work in conjunction with rheumatologist's more so than Oral Surgeons.

Whilst Oral Surgeons will generally be aware of connective tissue diseases that are not typically involved in there treatment.

Oral Medicine Specialists regularly treat Lupus and scleroderma patients and therefore have a better understanding of the subject matter.

Do a search on The American Academy of Oral Medicine which will give you a good overview. 

The key factor is that they deal with 'complex patients' rather than the routine cases seen by dentists and oral surgeons

[irish]

I have been to an oral surgeon about 4 times and they are not helpful with the testing that needs to be done to check for Sjogrens. If you can get into a Sjogrens study at a university you would be able to get the testing done that you need. They usually do the saliva test with the lemon to tongue, the eye exam, blood work aabd lip biopsy. I had a lip biopsy for diagnosis and I had no clue that I even had the symptoms. I had isues for almost 40 years before the biopsy though and had terrible teeth problems with about 1/2 my teeth pulled.

I think that the main thing that people need to do is to quit feeling like they need to absolutely have a diagnosis in order to get on with life. My diagnosis made no difference with my treatment for several years. It wasn't until I saw an immunologist that I had more testing done and it was found out that I had Myasthenia gravis, Hashimotos and severely low t-cells and other immune issues. This was when I was put on IVIG for the Myasthenia and eventually the Plaquenil for the aches and pains and inflammation that I was suffering from.

I had seen 3 different rheumatologists over the years and one for several years. One got me diagnosed with the Sjogrens but after that all she seemed to look for was the fibromyalgia. I always complained to her about other issues and she finally told me that I took up too much of her time. That was the last time I was her patient. About 2 weeks later I was seen at the University with symptoms of mycobacteria kansasii which she had missed also. Ended up with infectious disease for one year. Soooo, I do not seem to hold much faith in rheumatologists. I am sure there are good ones, but they are more apt to treat Rheumatoid arthritis,Sjogrens, fibromyalgia, etc and don't always dig as deep as an immunologist does.

So, as usual I got off the subject, but the oral surgeons are too involved with the surgery that needs to be done on so many people. There might be a stray one who is interested in autoimmune disease, but they are generally more into surgery as they are surgeons. I still think that we get diagnosed generally because of luck.We keep ono pushing and seeing more doctors and as luck would have it we finally find someone who can help us or knows who to send us to. My ENT knew who to send me to.  Good luck. Irish

[cccourt1942]

Hi Lillia,
     Make sure you read all that Irish posts.  Her path has been chronologically longer than most of us.  She gave you the answer to your question.  I am not going to go into your question.  I want to tell you my take on Sjogren's onset, symptoms, and diagnosis. 
     Emphasis on "my" take.  Most of this hypothesis is based on reading 100s of posts...maybe 1000s.  My profession was in a para medical field.  "If I had a dollar..."....ha, ha....each time I told a parent we can't always answer how or why, but we DID know what to do.  I believe that is how the various specializations for SjS treat us.  There are ideas on how it is kickstarted, etc, and discussions on genetics.  Nothing is 100% verifiable.  That makes no difference as various types of doctors know what to do for the symptomatolgies which make us crazy.
     Like Irish, I had symptoms (or aggravations) for a long time.  Not 40 years...more like 25.  The main difference between Irish and me is I didn't look for an answer. And that is what makes you SO smart.  You are looking for an answer.  You will find your answer...some day...by one of the various physicians which treats Sjogren's.  (Or..you will find another dx!)
     Just as we catch a cold or have a bronchial infection at various times/rates  till full infection, I honestly believe each of us has an individual timetable till we obtain our Sjogren's and subsequent dx.  As soon as a one reaches SjS positive point, all those symptoms have hit a crescendo and POW...one will be positive.  I believe you should treat your symptoms to make you more comfortable and follow those tests up every year or so.  The lip biopsy is the test which if positive will show you are seronegative for SjS.  I never had that test.  There was no doubt with my bloodwork outcome.  I have read enough on this site to know how elusive those little salivary glands are in that lower lip.  You have done your own homework (and "doctorwork") so you know you have something associated with SjS.  I would zero in on the lip biopsy.  As you well know, the doctors do NOT want to do this test over and over.  So you have to wait X amount of time.  Use the search option for this site for lip biopsies.  You will find dozens (maybe 100s) of posts from people who had more than one, and those who went to hospital SjS clinics who really dig deep for answers.   If that isn't an option, then the waiting game is your only option.
    There are lots of OTC eyedrops which will help you...I use Alcon Naturale tears in addition to Restasis.  Ophthals will Rx people with dry eyes w' Restasis.  I used those OTC Naturale tears for over 20 years.  It didn't stop the damage done to my lacrimal,  meibomian glands nor eyes. 
     I am not sure the MTHFR mutation is linked to SjS as I have it as well. I stopped taking the supplement after a year or two as it is genetic and the drug supplement had not moved my numbers...ever.  (tested each 3 months)  But...I am not a dr. and that is just what happened to ME.
     That's my last thought: each of us is different.  While it is wonderful to have a plethora of people who understand this disease and with whom we can discuss it, we are different.  Our ages, our geographical locations, our CNS, our genders, our work situations, our pain tolerance levels, our access to GOOD doctors, and our abilities to realize there is something wrong with us.  I add that last one as I lasted well  over 20 years and never thought anything was wrong with me but for the particular symptom bothering me along the way.  I associated everything to sinus issues or age.  I was 71 when diagnosed. 
     Again..this is my take.  No proof...no information to which I can refer you...and no discussion with anyone else regarding my take.  ONLY from reading these posts and listening at two small SjS support groups. 
      In the midst of my oral symptoms ramping up my dentist forwarded me along (for a jaw problem) to dental specialists in every area.  None of them got it...and NONE of them even mentioned my dry mouth.  Not one.  And...none of them could figure out what was wrong with my jaw: all said TMJ. I knew it wasn't. In the end (about 6 months) I yawned big one night and my jaw popped back into the socket.  It's never popped out again.  btw: It was painful.  VERY.    My point is I had every dental specialization probe my oral cavity and no one ever said I hadn't a drop of saliva in that area.
      Keep reading these posts...searching for a clue here, a hint there.  You never know.
Good luck,
Sjoldier c3

[MAT51]

I'm in the middle of big house move so haven't read replies to this thread fully. But I wanted to say that I don't fulfil criteria for SS in terms of dry eyes and saliva production - although I have at certain stages. Like Irish my SS has probably been going for about 43 years. I had to use eye drops as a child and my hair all fell out when I was nine years old. I've struggled with dryness of one sort or another all my life and I'm 53 now.

My SS was only formally diagnosed a month ago by the fourth rheumatologist I've seen in five years. He struck gold when I finally got off all RA treatments and steroids and these were completely out of my system. My ANA, previously negative, showed up at 1:320 with a nucleolar pattern - more usually associated with Scleroderma and Polymiositis than Sjogren's. Then he referred me for a lip biopsy and bingo - Sjogren's 100%. He thinks it is primary SS but I feel that in a sense it doesn't matter.

Two out of three oral consultants I have seen have been excellent and seemed aware that SS can present like MS for a minority of sufferers. In these cases the more severe eye and mouth dryness often come much later. The people I know who think SS is mainly a disease that only affects eyes and mouth are often those for whom it is a secondary connective tissue disease. These people often seem blame their primary disease for things that don't really add up, so are baffled by these extra glandular symptoms never suspecting that Sjogren's might be responsible. For these people it is often not to be found in the blood or by lip biopsy because it isn't their main systemic disease. Or the other less recognised symptoms become bothersome a long time after the eyes and mouth have become chronically dry. 

So it could be the case that your SS isn't showing up in your blood or lip biopsy yet because it is actually secondary to a different rheumatic or endocrine disease. People with Sjogren's often have thyroid disease and in my case I have found the overlap very great. I don't know which came first for me, Hashimoto's or SS. I also think that one day I will show the tangible symptoms of Scleroderma but for now, thankfully, I don't - or if I do it's the Sjogren's that is getting the blame from my doctors. But there are other symptoms that don't add up.

It's great when you have a diagnosis you trust. But then there's a danger that doctors look no further. So far I have not been offered any further treatments for my Sjogren's and this is the bottom line. When I had an RA diagnosis I was put on two DMARDs and that was that - everything was blamed on RA. So in my experience having a confirmed diagnosis often helps psychologically more than it does practically. You may well have SS and it just hasn't shown up yet. Equally you might have a different seronegative autoimmune disease. Just don't give up looking for answers is my advice to you.