Help please!

[INspirD]

Hi Sjogrensmum,
Thanks for your reply.  I did have an MRI of the brain when all of this began so a brain tumor has been ruled out.  I never really had any symptoms specific to a brain tumor so that was never a concern.  They did find white matter lesions on the mri, and after talking with many people on a Sjogren's site on Facebook, I've found a lot of them have the same. 

[MAT51]

I do agree that there are many conditions and diseases that can imitate Sjogrens and visa versa. I was misdiagnosed with RA in 2011 because of high inflammatory bloods, a weak positive rheumatoid factor and bilateral synovial joint pain. Turns out it was almost certainly the primary form of Sjogren's rather than RA. I too have Hashimoto's and I share many of your symptoms.

I was diagnosed last year by a highly positive lip biopsy result. I do now have a clear positive ANA, but while I was on Methotrexate and Plaquenil and steroids for RA, all were negative or equivocal. Many drugs and other things can interfere with autoantibodies.

So I would say hang in there regarding the autoimmunity whether it's Sjogrens or other. If you have one form of autoimmunity, as you do, then others can come along like buses. And bloods can be negative but swing positive just like that. If you don't want to risk the invasiveness of a lip biopsy and all of your bloods are negative then you might want to look for a different diagnosis. But I'm sure you're keeping an open mind to all the possibilities anyway. I too have white matter/ small vessel disease due to Sjogrens.

I would finish up by saying that a rheumatologist told me a year ago this month, that I definitely did not have Sjogrens or any other connective tissue disease. I asked him if being on a low dose of steroids might be masking things but he said no. I asked him what could be causing such high levels of inflammation/ protein in my blood. He replied that he didn't know but I should get multiple myeloma ruled out properly. I asked him what might have caused paired oligloclonal bands in my CSF and he shrugged and said "sorry but that's not my bag". He was wrong. My powerful instincts were proved indisputably right by that lip biopsy result. Trust your instincts is my advice.