What to do now?

[Meems]

I've had 2 ENT's tell me I have Sjogren's.  I've had two Rhuemys tell me I don't.  The last ENT said "I am 100% positive that you have Sjogren's"  I've had a lip biopsy that was positive and I had an elevated SSB. Other than that, I guess my bloodwork is normal.  So, what should I do?  I am uncomfortable with symptoms, and as you all know, sometimes they are worse than at other times...the fatigue is my biggest complaint.  Do I need to treat this?  If my parotid glands swell again, I guess I will just go back to the ENT, but why should I see a Rhuematologist every 3 to 6 months if they tell me nothing is wrong?  Who do I believe?  I thought a lip biopsy was kind of the 'gold standard' for diagnosis?   I'm so frustrated!

[Gayle]

I am sorry, I know that has to be so frustrating! I guess, if it were me, I would go with the lip bx which means you have it. It needs to be treated. Your ENT's can treat you. Sending you a hug...

[SueAnn]

http://www.nih.gov/news/health/apr2012/nidcr-11.htm  I copied this from another post.  It lists the new SJS standards for qualitfing for being in a research study. 

It sounds like you would qualify.  I would print it out and take it to the Rheumy and ask what the heck?

Best of luck,

SueAnn

[mshistory]

I don't understand why the rheumatologists are telling you that you don't have SjS when you've had a positive lip biopsy, positive SS-B and are symptomatic... what else do they want!??

Are the ENTs willing to start you on Plaquenil and will they monitor your bloodwork every six months or so for any complications? Rheumatologists refer patients out to different specialists if different organs get involved anyway, so you may be better off sticking with a doctor who's willing to treat you!

[Meems]

My thoughts, exactly.  I thought about calling or writing a letter to the ENT group that I see.  My ENT just was so amazed that a Dr. would tell me I DON'T have it...and she referred me to this last one.    Thank you everyone for your replies.