First post (kinda long) Really need advice

[TomK]

Greetings - I am a 62 yr old male with an unremarkable health history except I have been dealing with dry mouth, hyposalivation, lack of unstimulated saliva or whatever for about a year.  I am seeking advice on whether to go ahead with a lip biopsy as suggested by an ENT I first saw about 10 days ago.

First, please bear with me while i provide just a little history.  In 01/12 my dentist informed me that I had cavities below the gum line in both upper wisdom teeth and the molar in front of the right wisdom tooth and these 3 teeth could not be  repaired and would need to be extracted.  No big deal, right?  I had the extractions done by a respected oral surgeon on 02/09/12.  The recovery did not go so well, and I'm not trying to be funny but it basically felt as if I had someone else's teeth in my mouth for a few weeks.  In 03/12 I began to notice my mouth was starting to feel dry especially near the sockets of the extracted teeth.  The dryness quickly worsened and it has not really changed or taken a day off since it started.  I mentioned it to the oral surgeon and he said the extractions could not be causing the lack of saliva. 

I put up with the dryness thinking it would get better and because I had a regular physical exam scheduled with my PCP in 08/12.  Turns out my PCP was a little stumped and prescribed amitriptyline thinking I might have burning mouth syndrome brought on by the dental procedure (even though I didn't have any pain or burning).  The amitriptyline was bad news and immediately made my dry mouth REALLY dry.  I called my PCP and he suggested I consult with an ENT.

I put off seeing an ENT because I decided to get an implant and crown to replace the molar in front of my upper right wisdom tooth.  The implant procedure was finally completed in 11/12.  Sometime during this period my regular dentist prescribed Salagen which did not produce any saliva and actually made things worse (I think). 

In 12/12 I went to another oral surgeon for a second opinion and he gave me a pretty complete exam and said my saliva glands were producing lots of saliva with stimulation and he advised to eat only bland foods to see if that would help - did not help.

In 01/13 I had a phone conversation with my PCP and he prescribed 50 mg Zoloft.  (I'm not sure if he thought stress/depression was causing the dry mouth or I was depressed because of the dry mouth).  The Zoloft shut off the saliva big time just like the amitriptyline, and i quit taking it after less than a week.  Of interest is the fact that I had taken Zoloft for several periods over the last 20 years with no side effects.

As stated above, I finally went to see an ENT this month.  He didn't do too much of an exam or ask any questions but he ordered a lot of blood tests including CBC, tests for Sjogrens, thyroid, kidney, and liver function, glucose tolerance, and perhaps some others.  His nurse called a few days later and said all the tests were "negative" and the doctor recommended I return for a lip biopsy.  I assume a lip biopsy is a test almost exclusively for Sjogrens???

Speaking of Sjogrens,  I do not have dry eyes, dry nose, dry skin, or dry anything but dry mouth.  I do not have fatigue or pain or really any other medical symptoms. 

The only medicine I take is .5 mg of Clonazepam.  I have taken one tablet at bedtime for many years in order to sleep all night, and my PCP has now prescribed one or two extra tablets during the day because it seems to help some with the dry mouth.

I also should note that I don't "drink" but I've had two or three mixed drinks over the last year and the result was an immediate worsening of dry mouth.

I am somewhat wary of going ahead with the lip biopsy because my gut feeling is that I probably don't have Sjogrens and I know the biopsy hurts and I have spent the last year dealing with constant canker sores, irritations on the tip and sides of my tongue. and the implant procedure was no picnic either.

Thanks for reading, and I would greatly appreciate your knowledge, advice, and opinions as to what the heck I have and where I should go from here

[Tivia]

Did they do an ANA test? Not everyone has a positive ANA, but if you do that means most likely something autoimmune is going on. You mentioned they gave you salagen and it made it worse? Thats odd, because the worst I have heard is it wont change anything or make you drool like the village idiot lol

Did they do a salivary flow test, I would go that route before doing the lip biopsy. I know some people dont have a problem with it, and others have permanent damage to the nerves in the area from it. You have to weigh the pros and cons of what is right for you. Last summer my skin and eyes were dry, my mouth went dry in around july/august. I went to my reg doctor he assumed it was thyroid but my levels were stable. It was an eye doctor that I told about the dry eyes that did a test and said looks like sjogrens. Looking back I had a bout of dry burning hypersensitive eyes when I was a teenager. I remember going to the eye doctor then ,and he thinking ocular roscaca, but it went away till this past year. So I doubt it was OR.

So I prob had this illness for a long time, just didnt really manifest till last year, when it became obvious to me. So long story short yes a lip biopsy is considered the gold standard, its not without small risk of making the area numb and tingly permanently. Should you do it is up to you, some docs wont treat without a poss lip biopsy. I call BS on that, a good doctor will look at the history and overall symptoms and connect the dots.

[Tivia]

One other thing I am wondering, and dont take this to heart I am a wonderer 

But you mentioned after having oral surgery is when you had a flare up of dryness. See early last year in umm march I had some old fillings replaced with composites. My dentist used a nerve block right where your paratoids are located. It has crossed my mind over the last year if the nerve block damaged the glands and they set off an autoimmune response to the shots. I had both sides done, seems like maybe that could be a factor in mine setting off. I wonder how many people had dental work prior to developing sjs?

[TomK]

Thanks Tivia, 

Part of my blood work was indeed a negative ANA according to the nurse who called.  I have not found anyone who performs salivary flow tests but I would be interested in trying that in addition to saliva analysis. 

I have suspected all along that there might be some neurological involvement going back to the dental procedure.  I am not sure how that could be established.  Perhaps I should be seeing a neurologist.

[paisley62]

Hi Tom,

I am a man in my mid-50's with Sjogren's Disease.  I had several thoughts when I read your post.

--Dentists are frequently the first doctors to notice Sjogren's Disease.  They usually suggest seeing a Rheumatologist if they suspect it.

--Rheumatologists are probably the specialists that you want if you want to pursue the theory that you have an autoimmune illness.  They are the most likely doctors to be familiar with eye-dryness and saliva production tests, the proper lab tests, etc. 

--If you think you have nerve damage causing reduced saliva flow then either a good Rheumatologist, or a good Neurologist might help you.  The key word here is "good".  If one doctor treats you like you are "just depressed" to kind of get rid of you, or otherwise is not interested in helping you, move on to another doctor in the same speciality until you find a "good" one.  Changing doctors is a hassle with transferring records, etc., but it is worth it to eventually find someone who can really diagnosis and treat you correctly.

--Many, or most, people with chronic illness of any kind get depressed or anxious.  However, the depression or anxiety is not the primary problem, but is "Secondary" Depression caused by the "Primary" illness.  I have "Primary Sjogren's" with "Secondary Anxiety".  If I didn't have Sjogren's, I would not be so anxious and it would not be a problem.  So, accept a non-drying medication for depression or anxiety if you have it, just don't let a doctor dismiss you saying that depression is your only medical problem if you believe otherwise:  I only mention this because that type of "dismissal" is quite common in undiagnosed patients at the start of a serious illness.

--I was diagnosed with Sjogren's based on: physical symptoms  - of dry eyes, dry mouth, massive and chronic debilitating fatigue, chronic joint and tissue pain; ANA blood tests that were always low positive, bouncing back and forth between 1:80 and 1:160;  SSB antibody blood tests that were always positive and have increased over time; and a positive lip biopsy with a focal score of four.

--My lip biopsy was tolerably painful, and healed rapidly, but left me with a numb section of my lip that seemed to be permanent.  However, after about a year and a half to two years, the feeling came back to that area of my face, and now I can no longer tell where it was numb.

--I briefly searched the web for "dry mouth" for you, and the best information that I found came from the National Institutes of Health, which I consider to be an absolutely reputable source of information.  This is short page and easy to read, however, it is loaded with information that might help you with diagnosis and treatment of your problems: 

http://www.nidcr.nih.gov/OralHealth/Topics/DryMouth/DryMouth.htm

Good luck.  Getting diagnosed for any chronic problem can be a year's long and difficult process - it was for me.  I have heard that the average time to a diagnosis of, for example, Lupus, is five years after the onset of symptoms.  Based on my own Sjogren's diagnosis ordeal, I believe it.

Hopefully you will be fortunate and find the right doctor to diagnose and treat you very soon.  Otherwise, keep changing doctors and learning as much as you can about your problems by reading high-quality information from reputable websites on the internet - if you want to - the idea would be that this might potentially help you make better decisions about selecting doctors and evaluating the treatment options that they might suggest. 

Finding a doctor that you trust, if you can, makes things a lot easier though - then you don't have to obtain and review all of your lab test results, read incessantly on the internet, try to guess your diagnosis, etc., and can just trust the doctor to do all of that. 

[Dolly Dimples]

Tom, I would not rush into a lip biopsy if the only symptom is a dry mouth. You state you are 62,  well dry mouth goes along with old age ( pardon the pun)  Have you tried the Biotene products?  Oralbalance gel, toothpaste and mouthwash are very good if not a little pricey.  I'd rather try all other avenues before lip biop, as there has been some horror stories on that .such as permanent numbness. etc'. the former posting has some very good examples.   Dolly

[Pisces24]

I was diagnosed through blood tests.  ANA, SS-A and SS-B.  You should have those prior to going to the extreme with a lip biopsy.  All my #s on that were sooooo high it was no doubt I had Sjogrens.
Good luck and Welcome!

[MarkP_1972]

See if you can get a prescription for Salagen, it will get your spit flowing. Then check out Biotene (sold next to mouth wash in the store).

[cargillwitch]

it could be sjogren's but i am betting it's the clonazepam- dry mouth is a very common side effect.

Perhaps a talk with your doctor about changing meds might be in order.

[TomK]

Thanks again to each of you who have kindly responded to my post.  My internet has been down all day due to nasty snowstorm in MO  so I'm trying  to get caught up.