Well it has taken 18 months to get the diagnosis. I have seen 3 rheumi's. First two said Connective Tissue disorder. Second one said probably Lupus but doesn't want to say that until blood shows more. I only had 1 positive low titre ana and 2 negative. Third Rheumy who heads up the Lupus research for Barnes Hospital in St. Louis saw me two days ago and said LUPUS! She said I have Livido Reticularis all over body, Raynauds, Malar rash on cheeks and also a discoid rash on neck. I have complained of deep pain in body especially knees, ankles wrists hands and feet. Weakness is legs and hands. Problems when walking fast...I can't lift my toes to keep walking. Extreme fatigue, low grade fever about once a week. Migraines. Major memory and concentration problems. Tests have found lesions in brain and on spine. Started my first Plaquenil yesterday. Any advice would be appreciated.
Although none of us want to be sick there is such relief in getting an answer! I am glad you finally found a good doctor and that she started you on meds! Now you can get on the road to getting this disease under control
My advice...stay out of the sun...seriously. And keep chatting on here :)
It's good to see you here again. My advice is to check out the many threads in which we have discussed Plaquenil, and then ask any questions that you still have.
I'm glad that you've found a doc who is a keeper. Barnes is a good teaching hospital. I had a lot of med school and nursing school friends at SLU who also did some internships there.
May I ask who is your Rheumy? I'm trying to find one for my daughter, as we don't have one in our area, and as St Louis is only 2 hours away, we could make the trip.
Originally Posted by Ronnie