Anyone else out there with CNS Luspus have a encephalopathy diagnosis? I have seizures and the fog, but my latest appointment with my neurologist left me in tears. According to the tests my brain is continuing to slow down and it’s ability to keep up is less than that of a 90 yr old. I just turned 40!
I thought my CNS Lupus was limited to the seizures, peripheral neuropathy and memory stuff but when I read the full extent of the encephalopathy diagnosis I just was in shock. It fits, but I so scared and depressed. Am I really going to lose my mind? I’m petrified of what this means for the future. All I can see is being a burden on my husband and that there really won’t be much of me left in 10 years.
Feeling very alone. Nobody in my local support groups has any of the brain stuff or the widespread pain, so I’ve stopped going. We all have the same illness but it just feels like we’re on seperate planets. I’m being forced out of my job at the moment - because of “mental incompetence” - after a successful 15 year career. We have a lawyer but the stress of it is making my mind worse and taking me down.
I want to help my brain, but I just don’t know how. The docs just give me more meds, but there has to be other types of treatment? Is there such a thing as “brain PT” for us autoimmune folks?
Any help or support would be appreciated. I don’t want to feel like this is the end of the road.