Neg blood test, but so many symptoms

Quite agree - you really do need to get to the bottom of that problem with your salivary glands. I suppose you realise this is the likely cause of your "chipmunk cheeks"? When the outlets from the salivary glands are blocked, back-pressure of the saliva that can't escape causes swelling. 

I thought so too and it probably is. My CT scan revealed enlarged parotid glands, thyroid, & lymph nodes in the neck. My DR ordered multiple blood tests, but since they all returned normal, she is clueless. And she is not the only one. My ENT is as well. Neither have an answer as to why these glands are enlarged, and both have said it is basically pointless to continue testing.  

Sounds to me as if someone should biopsy at least one of these swellings. This isn't normal. My main concern would be with the parotid glands. I'm guessing from your use of language that you're in the US. I don't have a lot of experience of their medical set-up but most places in the world you can insist on a second opinion - even in the UK's Stalinist-Nanny-State health service. (Sorry if that latter remark upsets any NHS fans, but as a UK-born, long-term expatriate, I've had the chance to see it done better elsewhere.)

Yes, I live in the USA. I am trying to convince my primary to refer me to a rheumatologist. If she continues to deny me, I will seek another primary care doctor. It is just the crazy wait in between, lol, I need patience. 

Thank you for the advice. I am trying to convince my primary to refer me to a rheumatologist now. 

Hi Morgana

Sounds like you're got several admin problems compounding the physiological ones: sucky GP (same term US as UK) and one of our stateside sucky insurance programs which slow down spending by making people wait months to years to see either specialists or a new gp. Makes me feel lucky all over again in the ENT who diagnosed me. Didn't have a gp back then so his word was law. Still, later on when I had so much pain under my tongue , he was clueless. Then he was out one day and I saw someone wet behind the ears who said I had stones in my sub-lingual. AND I DIDN.T NEED SURGERY FIRST: He said let's try a long course of low dose antibiotics.

I did that and kept reporting no luck. Then I kept feeling an occasional piece of grit in my mouth, almost always a bit after evening meals. Took me a while to figure out that those pcs of grit were the stones.

Same guy I guess sent me over for tests on all salivary glands and I had one of those Ross Geller "Friends" moments not uncommon in this group: the specialist did all the tests then said I was very unusual, and would I mind if he brought in a few others because few docs ever got chance to do more than read about people from whom saliva couldn't be provoked. Next thing I know there are 30 docs (level 1 trauma center & low-income hospital) looking into my mouth. Finally after everything else and squeezing tons of lemon juice into my mouth, voila! One drip of saliva was provoked from the subliminal. The room cheered, I kid you not.

My parotids were dead and maybe submandibulars also, so I'm very glad to have avoided surgery on my sublinguals. I make adhesions on my insides like crazy wherever I've had surgery and I think those would've eventually ruined the sublinguals. (Yes there's a term for people like me lol)

We can't predict anything about you based on my case. But it is vital that you start treating your mouth as if you have SS, hence the suggestions by someone else here about drinking water and seeing dentist. But just as important are the toothpaste & mouthwash you use: get rid of ones with sucrose, any form of fructose, and alcohol. There are several brands that say they're for dry mouth but you still have to check ingredients, then try them out If it burns your gums, ditch it. Ditto for mouthwash. The goal is to get a clean mouth but do not rinse with water, use the mouthwash since it provides some of the protection others get from plentiful saliva. A good dry mouth paste does the same so if you can't afford both paste and wash ($$$), just use paste but don't rinse at all, eject the excess so to speak. I happen to use a brand with a light blue on white packaging design, name starts with a b and ends in ene, my then rheumo never told me this, found the brand on my own.

It's also important that you wait 20-30 mins after eating before you brush so that enamel can recover from acids in food (and most things we eat have acids which attack our teeth). Many of us rinse after eating, or floss and rinse, or chew a particular gum after eating. It's sold in most health food stores by the toothpaste, even at whole foods market. Think of a spry little old lady and you've found it, several flavors. This gum helps make up for our lack of saliva.

Many of us chew gum a lot. I'm 61 and wouldn't have survived from my mid 20s til now without billions of pieces of gum. As whole pieces of non-stop gum are so big they make my jaws hurt I mostly chew half pieces. This helps keep dry mouth at bay, and the terrible breath which can come from dry mouth.

So you probably already know all this, no offense intended. Take care of your mouth because you lack all the saliva called for in the master plan, lol.

Thank you so very much for all the advice. It is most welcomed. It is nice to hear from those with more experience, and just to talk to someone who has and is going through what I am. All I have is the internet as I do not know anyone with SS personally to talk to, and as I said, my drs have not been much help. 

There is a Sjogren's foundation here in the States, headquartered @ Johns Hopkins. I called them to find the closest in-person support group. It couldn't hurt to try them. But I know exactly what you mean, this group us great, and someone's always up.

As usual on this whole Sjogren's board, I'm struck by the similarity of our experiences - the sheer serendipity of chancing on a doctor who understands our symptoms, or is even prepared to believe us! To the best of my knowledge we have sufferers from the US, the UK, Canada, Israel, Australia, The Netherlands, Belgium, and doubtless other countries that have slipped my mind. All telling a similar story - waiting years for a diagnosis, or self-diagnosing, having our symptoms dismissed or put down to old age and, in the case of some unfortunate individuals, getting inappropriate treatment that could make the condition worse. Aitarg narrowly escaped that one, and I've been avoiding it for years by refusing to take any prescription meds or undergo any investigations or procedures other than dental care, blood tests and eye checks.

My previous GP finally came around to the diagnosis of SS after a mere 10 years (which I realise is actually quite good) but after a house move two years ago, I now have another one to convince. This one says I definitely don't have SS as it's only an eye disease and if I'd had it for 20+ years I'd have corneal damage by now. He's sympathetic about the joint pains, tendinitis and myalgia which are making my life a misery in this current flare-up, and rightly says they're down to RA... for which he prescribes NSAIDs. (But don't worry - I smile sweetly then tear up the prescription once I get outside.) He says the intermittent Reynaud's syndrome, peripheral neuropathy, dry eyes and dry mouth are unrelated signs of old age. Sigh...

On the bright side, the new GP surprisingly turns out to be a keen proponent of "leaky gut" theory. Now I admit that my reaction to this idea has in the past been: "Yeah, right..." but he's actually convinced me. He recommended a powerful pre- and probiotic mixture recently arrived in Europe from the US, with which a colleague of his had done some informal trials with good results. At least he admits I do indeed have an auto-immune condition (RA) so he pushed me to start taking it. Although I had to stop the first trial due to the side-effects (violent exacerbation of symptoms, depression, mental confusion that had me thinking it was the onset of dementia etc.) I'm now several weeks into a return match with the stuff, and just starting to get good results.

The twin moral of this story is to: a) educate ourselves so we can manage our own symptoms; and b) try and find a doctor who is open to dialogue and new ideas, even if he/she has never heard of Sjogren's - and that happens too! I think we can do a lot to educate our doctors, providing we take a low-key, tactful approach.

Don't worry about my reply getting held back. I wasn't saying anything untoward! As it was an automatic suspension - i.e. kicked in as soon as I hit the Reply button - it will be due to some "illegal" combination of punctuation that the automatic moderator deems to be a link. I keep trying to remember not to do things like that! Once the human moderator gets to his desk on Monday morning it will be restored, as it contained neither links, nor brand names, nor inflammatory content.

Hint: Ensure you put a space after a full stop else it gets auto-moderated.

Nope - wasn't even that in my case. As a touch-typist who was obliged to do it for a living for a few years, I always do that anyway. Sometimes it can be as simple as putting a punctuation mark at the end of a sentence that's in brackets. The moderator told me a while back that they're working on this one but I guess it takes time. But it's still a great site once you get used to its funny little ways!

Now I'm intrigued!

By what? The punctuation or the probiotic?