sjogrens syndrome/very frightened.
Well, I am not doing to well. I recently had a diagnosis of Sjogrens after years of not knowing these strange symptoms affecting all parts of my body. Doctors suspected Lupus for years but no positive ANA tests or anti DNA or RF. 2 weeks ago my wonderful Rheum. finally had a positive hit on Sjogrens. He suspected this disease all along but could not give me a definitive diagnosis because the blood work would not show anything. But he hung in there knowing there was something wrong and prescribed Medrol. Big improvement but not with the "Run over by a monster truck fatigue." Unrelenting, horrible fatigue. As though I was dead and they just refused to bury me. I had a strange malady strike when I was 30 yrs old back in 1988. It lasted for 2 years but got through it with the help of another steroid which I was able to take on my own due to my mother having to take it to sustain her life. Could not breathe, severe fatigue so bad I would fall. They said I had emphysema at 30 but thereafter it disappeared? LOL. oh, medicine in the 1980's. What a joke.
I always had in the back of my mind that this thing would come back. It was devastating and my company gave me a whole 2 weeks off to find a diagnosis. Well, it is now 2011. I saw every doctor that I needed to that this disease affected. From GI docs to hematologists. I am beginning to believe that there are about 3 intelligent, dedicated doctors in the USA. Finally, a diagnosis after 23 years? Really? I had so many classic symptoms. I could diagnose diseases after 23 years of trying to find an answer to this mess. I believe this is a secondary diagnosis of Sjogrens due to what happened to me at age 30. Unfortunately I moved from Philadelphia to NE Pennsylvania.
Finally, my question......Is there anyone here with Sjogrens and Lupus who could share their story. I am frightened. I am a single mother, 15 yo daughter, was exceptionally successful in my career of 27 years even though I missed two weeks trying to find that all elusive diagnosis. Scare of leaving my daughter alone there are 3 people still alive in my family and I don't want to leave my daughter by herself. God, she needs me.
Last edited by Administrator; 01-10-2012 at 11:21 PM.