newbie with questions about positive results turning negative now

[cushiebear]

Hello all!
I am very new to all this and am hoping you all can shed some light on my situation. About a month ago I presented with parotid and submandibular swelling. First it was thought that it was dental, which my dentist said no way, then it was staph infection so I was put on two antibacterial antibiotics, which did nothing. I was finally sent to an ENT who thought it was the mumps! He did some blood tests, which included a test for Sjogren's, and all came back negative. It got me reading more about Sjogren's and made me realize that I have all the classic symptoms such as dry everything, fatigue, muscle and joint pain, etc. I then went to my primary doctor who ran an ANA, SSB and SSA, and they all came back negative but she did say that I , in the past, had had a  positive ANA! Of course no one ever bothered to tell me that and I have been sick for years, grrrr! Thank goodness my ENT has agreed to do a lip biopsysince I am still having so much pain in my parotid glands. My questions are, has anyone else presented  with such severe parotid pain and swelling for an extended period of time and what can be done to get them back to normal, whatever that is? Any input would be appreciated.
Thank you:)

[Joe S.]

I believe that quite a few have positive and negative and finally positive results. Some do not have supportive blood work and are diagnosed on symptoms alone.

In my signature, you may find some alternative supplements.  Others may have a mix of meds and supplements.

[cccourt1942]

an ENT who thought it was the mumps!

I really did have mumps a second time:  when I was 22!! Can't believe an ENT tht that though.  Wow. But...what I really wanted to tell you is I was treated  by my ENT for sialadenitis (and will let you google that) for nearly 5 years prior to my dx... SjS not mentioned nor suspected by the ENT.  These specialists should know when those parotids are hurting, it COULD be related to SjS.

My questions are, has anyone else presented  with such severe parotid pain and swelling for an extended period of time and what can be done to get them back to normal, whatever that is?

1st- Yes...after you google sialadenitis, you will know how it was dxed..and at times I could massage or apply warm, moist heat to get the sluggish saliva moving...but most times bacterial infection was full blown almost immediately..and antibiotic followed.  It was painful, it could happen within seconds, and no one had a clue what it really was. 2nd- (back to normal) I don't know.  Now that I understand what SjS is, it's a coin toss if you can stop or slow it down.  I am responding as I ignored it (as I was seeing doctors for the sialadenitis) and let it go on for so long.  It progressed to burning tongue/mouth....and NEVER mentioned that to a doctor...my teeth had already had brownish streaks across them...and my dry mouth was perceived by me as "craving" water.  I actually said this so many times over the years to people who would see me chug a lug water and comment about it.  I am so slow I never put it to "dry mouth".  The truth is I had always consumed large amounts of water.  If that sounds as if I am dense, guilty as charged!  Bottom line:  by the time I was dxed my lacrimals were hardened:  no tears in well over 10 years.  I am on restatsis now and the "film" on my eyes feels nice now..but the stinging turns my eyes red for a couple hours.  Still no tears due to what I believe is damaged lacrimals.  My sub lingual salivary glands are hardened, still questionable about the sub mandibulars, left parotid hardened but right still producing saliva.     BUT...after less than two months of plaquenil and 5mg prednisone once daily, I am beginning to have left parotid "movement". That means the T-cells in that gland are stirring.  THIS IS GOOD.  I asked my rheumy yesterday (not her specialty) if that was possible that parotid had something in there trying to move (that is produce saliva) and she said she "thought" it was a good sign too.  All that to say, MAYBE...not "back to normal" but BACK!  I have told people for over a year my lacrimals and all but one salivary gland are shot.  I may have been wrong.  So if you receive meds in a timely manner, find the supplements best for you, MAYBE! 

I don't think SjS is diagnosed with positive ANA alone.  I do not know.  I am not a physician.  I believe it should have alerted whoever read the test to follow up perhaps yearly.  I understand the positive results on the blood tests can be an elusive quest for many.  There is another test primarily performed by ophthalmologists ..the Immco test.  You can search on this forum for info and earlier discussion on it. 

And a comment:  Do you really want your ENT doing the lip biopsy who thought you had mumps?  I have zero experience with this test.  I have read good and bad discussions of the test on this forum.  I have read many comments about inexperienced physicians performing this test.  If this guy doesn't even suspect SjS, my question would be how does he know about lip biopsies.  If I am overstepping myself, I apologize.  Just sayin'.  We have thousands of salivary glands behind our lower lip...and I understand they can be abundant yet elusive.  AGAIN...I have ZERO experience with this. 

Keep us posted.  I wish you the results for which you are searching.
c3