SSA & SSR came back normal?????

[joycekatherine]

So, am I right in thinking, that I could still have Sjogren's, due to so many symptoms?  And should I request a lip biopsy, to be 100% sure??  I just feel in my gut, that it is Sjogren's...dry mouth, dry eyes, dry skin, dry everything!!!
I feel, I just *HAVE* to know, one way, or the other...any thoughts, advice, etc.??

[joycekatherine]

Thanks for letting me know!!  I have an appt with a Rheumy in Sept., so, hopefully, my waiting is coming to an end!  By the time I see her, it will be 6-7 months since the stuff hit the fan!  I have had dry eyes for over 30 yrs and dry mouth for about 7 yrs...it would be wonderful to finally have an answer...for myself and to validate what I'm going thru to my family/friends...most of them just don't get it...I pray that nothing like this happens to them, because their denial and non-belief, would certainly keep them from finding the truth and getting any kind of help or relief....I'm a "gotta know" kind of girl!!!  Knowledge is power....I'll let you know what happens.  ;)

[AireScottie]

Ditto for me on the negative bloodwork, although my CRP has been up, and Sed Rate up ever since it was first tested in 1999.  Do the biopsy!  You need to know if it's not Sjogren's so you can look for something else, 'cause your body is definitely not functioning normally :)

Yeah, I have a tiny bit of my lower lip that went crazy with nerve tingling for a while after the test, but almost three months later, it's almost back to normal.  The Fellow was learning how to do the procedure and grabbed a nerve instead of a gland the first time.  Do I care?  No.  It's so great to have an answer!

[Cindee56]

The blood tests were negative for me also.  I went to an oral pathologist, recommended by my dentist, and he did an examination and said it was definitely Sjogren's.  He could not squeeze out any saliva and my tongue and roof of mouth, which bother me the most, are all white and dried out.

I asked about the lip biopsy, and this dr. said that they can also give a false negative, and he didn't want to put me through it.  But I guess if I had insisted....

[joycekatherine]

Thanks so much for answering so quickly!  I have an appt with a Rheumy on 9/3 and another Endo on 7/22, so I will see if I can get the Endo to order an ANA & RA and check my sed rate...really appreciate your info!!  ;)

[cudagirl]

100% yes!  My labs did not show Sjogren's..I had a lip biosy.  Your doctor should do it anyway.  Sjogren's labs come back positive in in a percentage of people. Usually you will have other labs that are positive like ANA (79-90%), Sed rate, RA factor and others.  I would defiantly push for a biopsy.  There is one draw back though.  The area that they do it on can have permanant loss of feeling.  I had mine at Thanksgiving and still do not have any sensation in an area of my lower lip.  I did find out though, and to me it is better knowing.