I have been diagnosed with CNS involvement. I have had it for over 40 years and have dealt with symptoms as they come. Take it a day at a time, DO NOT be afraid to ask for help when needed and keep a POSITIVE ATTITUDE. I hope this helps you a little.

I’ve had cns lupus 5 times and presently have. I had psychosis with prior 4 times... last three times had slurred speech and couldnt find my words. Last two times I had a stroke; fully recovered and had terrible dizziness whenever had positional change. Presently that is what I have now. With any positional change of my head or turning my head, the floor seems to fall out from under me.. I swim around with spinning and the world tilts on edge. This is the first time ive not be admitted; possibly because I have no rheummy this time round as she left practice and My pcp internist left as well as Im seeing brand new internist. Its been going in for 4 weeks and im on 60mg prednisone orally daily. My port stopped working right before this flare so I just had it replaced Monday. Ive decided, that if I still have this at years end, we will drive to Memphis and present at the major hospital Ive received excellent care from before and which has the university rheumatology program. Last time we did this. After being in hospital here two weeks and not improving we drive there and was admitted. Took 3 weeks but they got me well. This lasted 4 months when I had it two years ago... and Im worried I will have more complications. I hate it when doctors leave. I know they have families, dreams, and such as we all do. Just in this area there is a critical shortage. No internists were taking new patients so they set me up with a “resident” who comes to clinic once a week and is supervised by the senior internist. Not the best scenario.

Recently got diagnosed with CNS involvement...ended up in the hospital with aseptic meningitis with 104 temp. Very scary. Since then, I've had headaches, neck and shoulder soreness, numbness in head and ears, memory loss, brain fog, etc. What are your CNS symptoms?

I get very pain in all my leg joint plus I get these lesions that hurt I take steroids some time I am regular clondine for my blood pressure and I had stroke