CNS Lupus

I was diagnosed with lupus 13 years ago because of mild arthritis and the butterfly rash on my face. No medicine at that time was needed. 6 years after diagnosis I woke up one morning with complete paralysis on the left side of my body and no temperature sensation on the right side of my body from C2 region down. They diagnosed me with transverse myelitis-treated me and I responded well to the solumedrol, etc. I recovered my strength with physical therapy (but never recovered from the temperature issue). My rheumatologist then thought it would be good to place me on plaquenil and methotrexate, 2 years ago I started having pins and needles in my hands, feet. Also, my body felt cold in certain places, upper thigh, right foot. It was definitely sporadic, then my vision started getting blurry. My doctor started me on prednisone and it seemed to make it a little better, but when I come off of the prednisone it reverts right back to these issues. My neurologist did an MRI, cat scans, EMG, EEG, tilt table test, spinal tap, etc. There are two white spots on my brain, but inconclusive. They are treating me for symptoms that I am telling them I have. Just last week, I found a new neurologist (who listened to me and genuinely seem to care about the issues) and he is working with my rheum to help me get better. They switched my meds to no more methotrexate and 100 mg of Imuran. They want me to decrease my prednisone to 20 mg (from the current 30mg) over the next month. My question is: is this something that is degenerative? I have no other issues other than CNS lupus and everything that I have read makes it seem like a death sentence. I am so nervous about this because I feel new symptoms daily. Just two days ago my left toes started twitching and they don't stop. I have a motor (vibration) in my left side of the chest that shakes my internal body (as well as my vision, teeth, arm). No one notices it, but if I point it out to my husband he can see it. Could this be the Imuran taking affect and shaking the symptoms up? I am nervous to have a seizure and I want to stop anything like that before it could happen? Have you heard of these symptoms before? Will they go away?

Please help!
Thanks,
Johanna