Originally Posted by hopeful

Hi Silverlady,
I can't believe Sjogrens is being discussed here today. I came on to ask if anyone knew anything about it.
I don't know if this will help anyone. I was seen by Kathy Burks and Dr. Polydeskius (unsure of spelling) in neurology at Hopkins yesterday. They believe that I have Sjogrens. I had a neg ANA a while ago but they want be to have a lip bioipsy and eye test (for tears) and did blood work. I have always had dry eyes and mouth. I assumed it was from the meds.
They did tell me that it is possible to have all testing come back negative and still have Sjogrens. They said depending on the results they would like me to go see the doctor that heads up the Sjogrens Clinic there. My guess it is Dr. Birnbaum.
Part of me wants a diagnosis so I know what I'm fighting. The other part is afraid to take the diagnosis even if the testing comes back negative.
I had a bad experience. I was dx'd with RSD and went through with the ketamine treatments because I was told there was a possibility I would be pain free. I never believed the diagnosis and should have gone with my gut instincts. I was desperate.
I finally went to see Dr. Raja at Hopkins. (specializes in RSD) He said there is no way I have RSD. Long story but that is how I ended up at Hopkins again yesterday.
Question for everyone. If everything somes back negative would you still go with Sjogrens diagnosis. I fell like I am fighting a ghost here.
I do have a positive small nerve biopsy. My symptoms do fit the profile.
Thanks,
hopeful