Which kind of specialist should I see for a diagnosis?

[Merricat]

Hi,
I am a 24yo female and recently experienced the sudden onset of dry eyes and dry mouth. After a visit to my primary care physician, I had an ANA test, which came back negative for both SSA and SSB. My doctor told me to see an optometrist about my dry eyes and has now dismissed my dry mouth as a symptom. My dry eyes and mouth are really driving me crazy and I just want to know what the problem is. I am so frustrated and am sure that it is only making things worse!
I understand that there are further tests that can be done for Sjogren's and my question is - who should I see about them? A Rheumatologist? An ENT specialist? I should probably mention that oral contraceptives are the only medication that I am currently taking, other than LOTS of eye drops. Any ideas would be much appreciated!

[Linda196]

Hello Merricat, welcome to Sjogren's World.

The usual doctor to see for diagnosis is a rheumatologist, but an opthomalogist or ENT may also have helpful input, and be able to suggest further testing.

As you look through the posts here, you'll find lots of information about testing, OTC and RX treatments, and helpful hints.

[JannaLee]

Merri,

An ENT can do a lip biopsy to look for inflammation of minor salivary glands.  This test is a bit tricky and if you choose to seek it I would find a doc who has experience doing it.

Have you googled Sjogren's Syndrome diagnosis?  You can see the criteria currently accepted for diagnosis.

I am so sorry for your discomfort and frustration!  It is a shame this seems to happen to so many people!

Best to you,
Janna

PS I just got a letter from the Sjogren's Foundation telling me they are doing a mailing blitz to rheumatologist's in America with information about Sjogren's because this disease is so poorly understood and so often not diagnosed!  They claim they have gotten immediate and numerous response from these physicians asking for more information!

[Merricat]

Hi,
Thank you both for your helpful replies. It is so nice to feel as though I am not going through this alone!

I have been googling quite a bit, as well as reading posts here. I am hesitant to sign up for a lip biopsy just yet and instead think I will pursue a Schirmer's test with my opthamologist and then a salivary gland scan.

I did see a Rheumatologist in February because of a bout of pleurisy and subsequent positive ANA test, but at the time they were looking for Lupus, which I had no other symptoms of. I think I will try to call that office tomorrow and see if perhaps they would be willing to see me again, given my most recent symptoms.

Thank you again!

[JannaLee]

That is a good plan, but if you do not get satisfaction from this Rheumy, always remember there are other fish/docs in the sea!

Sometimes you gotta look for someone who knows about this one.  I would ask right off if he knows what the estimated percentage of Sjogren's Syndrome patients that are sero negative is and does he ever diagnose on symptoms?

Good luck kiddo!
Janna

[baddabingtim]

Are you on any medications - do you have a history of anxiety, OCD - I have dry eyes that bothered me until I got dry mouth - then my eyes did not bother me - sometimes I wonder if its just anxiety or OCD - problem is if you take meds for those - side effects are dry eyes and mouth

[Merricat]

Hi,
No history of anxiety or OCD and am not taking any medications. The dry eyes started a couple of days before the dry mouth, so part of me wonders if maybe my anxiety over the dry eyes caused the dry mouth...but it is still with me two weeks later. As I said, ANA (SSA and SSB) and Schirmer's tests were negative. My optometrist is treating me for blepharitis as the cause of my dry eyes and I am just not sure who to see about the dry mouth, which has started to burn a bit. Perhaps a salivary gland scan through an ENT? I feel like going to a Rheumatologist would be premature at this point, despite the fact that I have access to one at the Harvard Medical School. I just don't want to waste his time. Wow, this is frustrating!!

[Patze]

Hi Merricat,

Let me also welcome you to the SJS World!  Please look around the board as there are tons of topics that may have some answers that you are looking for.

If you're having problems with a dry mouth, have you seen a dentist recently?  If you have, what did he say?

Hang in there and take care -

Patze

[Merricat]

Hi Patze,
Thanks for the welcome! I actually have an appointment with my dentist on Tuesday, scheduled before any of these symptoms developed. Handy, eh? I am going to run my mouth symptoms by him and see what he has to say. My PCP has been no help whatsoever (surprise, surprise) so I am at the point where I am getting advice from anywhere I can think of, then screening it and deciding where to go from there. From reading posts here, I can see that finding a helpful doctor is probably going to be the biggest challenge of all - be it a PCP, Rheumatologist, ENT, etc. I just want to find a doctor who is willing to run some tests and do some research and not look at me like a crazy person. Thanks again!
Merricat

[eyeamdry]

I would not submit to a lip biopsy just because you have dry eyes and mouth.  If you have other, more serious problems, the biopsy might be worth it.  The lip biopsy is nothing but tearing up your lip if you're unlucky like some of us have been.

If you do have Sjogrens, or if you do not have Sjogrens, the treatment for dry eye and mouth is the same.  If you have Sjogrens with only eye/mouth symptoms, all you will get are drops and advice. 

Lucy

[kindandcaring]

Hi Merricat ..that Scintagraphy test... if you can find someone to refer you can really easily identify if your saliva output and/or saliva glands have a problem...though I noted that you have zero blood markers...(like me and others !) so a lip biop is the only way to diagnose in or rule out Autoimmunity causing any persistant dryness...

I would have a Scintagraphy ..the results could determine where best to have a lip biopsy..


For the eyes ..the only test available is the Schirmers...I really do hope in the near future that better disgnostics emerge..than a simple Schirmers test..yet thats all we have at the moment.

All my best

[Redetha]

Hello and keep looking for right doctor.  I was diagnosed by my ENT and even though I see a Rheumie, I trust my ENT the most.  He is great.  He sent me immediately to the Optomologist and that doctor did his tests (Schrimer) which showed damage in my left eye as well as extremely dry eyes.  He is the one that is really "on the ball" with me.  Keep looking until you find what works for you.  And keep coming here for info and support.