Good morning all
I was diagnosed with CNS lupus over a year ago. I know lupus can take years to fully diagnose. I have been very lucky and seen highly regarded lupus specialists but....I don't think I have lupus. I have been battling this with myself for a long time.
I know a lot of you amazing people have many diseases /illnesses alongside having lupus, hence why I'm coming to you all for your opinions.
My symptoms are; Positive antinuclear antibodies and chronic pain down the right side of my body. The pain gets worse with prolonged physical activity. I show no sign of muscle weakness. My symptoms have never changed. Not got worse and not got better in 1.5 years. I have had 3 MRI's on head and spine and nothing has shown up. I have been on very strong pain meds for a long time. I'm also back on steroids as my doctor has put me on immunosuppresents 2 months ago as nothing was taking the pain away. I have been feeling great the last couple of months but I'm under no illusion that thus feeling could be the steroids.
I'm hoping to start to come off all my pain meds to see if the immunosuppresents are actually working.
If they don't work and my pain is still there then does that mean I don't have lupus? If so what on earth could be wrong with me? I'm working full time and want to continue but my employer will want to see any indications of improvement.
If I'm in denial over lupus then please tell me. I want people's honesty.