Sjogren's Mystery

[Sharon]

Any good detectives out there?
I'd be grateful if anyone can help me figure this out as I've lost faith
that the medical profession can.

I suffer from a unique form of salivary gland swelling:
-It gets worse the drier my mouth becomes and when I take any meds that increase dryness (such as antihistamines).
-Whenever I eat it is not only my parotids but the accessory salivary glands as well that swell, causing my cheeks to temporarily puff up like a beaver until the saliva drains. The more saliva the food I'm eating induces, the puffier I become until the saliva drains.
-Prednisone and Guaifenesin make the general swelling much worse since they worsen my dry mouth for some reason.
-I've had extensive testing done and they found NOTHING to explain my symptoms:
My salivary gland MRI came out NORMAL, no blockages, no damage, didn't even show inflammation, and a specialist said my saliva is not even thick.
-I had an endoscopy done on my paroitids and they flushed them with antibiotics and steroids but it did not help with the swelling phenomena.

So does anybody have any suggestion as to what might be causing this???
It's been 2 years now with this mystery symptom. 

[irish]

I had several things fly through my brain and I will just put them down for you to ponder over. If they are even worth pondering.lol

The first thing I thought was if this w.as a case of saliva being secreted so fast that it couldn't be drained fast enough. Even if your saliva isn't thick I wonder if it still has the same composition as it used to. The body changes the composition of the saliva when we are affected with Sjogrens.

This sure is a weird manifestation for you to deal with. I am also wondering about the effect of theprocess that takes place with the glands and production of the saliva or mucus. Is there some chemical action that causes an increase in circulation of blood to the area that leads to the swelling??

Have the doctors isolated just what is swelling? Is it the tissues in the face or the small and large salivary glands individually? For some reason the thought of the temperature change in the tissues due to the increase of saliva seems to be bugging me a little.. Metabolism itself can cause a rise in temperature in certain areas.

What happens if you place cool cloths on the swelling?? It is not fun to have these problems that occur and not know what or what to do to treat it. Hope others can come up with some thoughts too. Good luck to you with this. Irish

[Sharon]

Thanks Irish, those are interesting questions.
I'm certain the composition of my saliva has changed with SJS.
Local change in temerature doesn't seem to change the occurrence.
I have been to top specialists in my area and they can't figure out what is causing the swelling.
The immediate swelling the occurs when I eat must be the glands since it also drains quickly.
The general swelling I get from dryness might be the tissues since it's more stubborn in going away.
I was almost certain there were mucus plugs in my accessory glands preventing the glands from draining properly, thus causing temporay swelling when I get a rush of saliva upon eating, but the
MRI didn't pick up on anything.