Quote:
Originally Posted by DavidHC
So I'll definitely have a lip biopsy done. Not sure if the further SSA and SSB antibody tests are necessary then, no? But I haven't ruled it out, especially now that I know so many test negative for the antibodies. I didn't know that, wow! I do have a lot of the symptoms, but I also have lots of other symptoms. Clearly there is something happening with my immune system, what label we put it may only be important in some cases and especially those that allow for IVIG under the system here in Canada. Some neuropathies allow for it.
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It is possible to get a Sjogren Syndrome diagnosis with a negative lip biopsy and a positive SSA/SSB/ANA, so these tests are important.
The risk for neurological disorders (such as neuropathy and trigeminal neuralgia) and Lymphoma, is much much higher when having Sjogren. So a Sjogren diagnosis might help you with the diagnosis and treatment of the other problems.
I had severe dryness and joint pain but negative antibodies and nonspecific inflammation in lip biopsy so didn't get this diagnosis. But... I had many of the problems that are much more frequent in Sjogren - Adie tonic pupil, trigeminal neuralgia, Lymphoma, POTS, and SFN.
Although I don't have any specific autoimmune diagnosis my neuro recommended on IVIG/Rituximab because it is more likely that I have something like Sjogren, then having all the above complications of Sjogren without an immunological cause.
Good luck getting a relatively quick appointments !