Hi all. I have been diagnosed with UCTD w/SLE features thus far as well as Epilepsy. Ive had 3 seizures in my whole life but since the first one have had nystagmus(eye twitching)at random times..sometimes more, sometimes less everyday. It also gets worse when I get tired... However, I have a similar feeling that I get inside my head. It feels like its literally in the middle of my brain...it feels like the same few second twitch that happens with my eyes. I get this less than the nystagmus but it throws me off balance for a second and I have to sit/stand there and gather myself sometimes before I move. I have not been diagnosed with any CNS involvement but was put on neurontin for neuropathy type burning pain in my legs,arms & back of shoulders/neck(didnt work)and have orthostatic hypotension, the epilepsy(which started at 15 yrs old before my disease started appearing slowly),tingling in my feet/legs hands/arms and face, brain fog, raynauds syndrome,dizziness,shakiness,weakness,constant tonal tinnitus & intermittent pulsatile tinnitus,a cramping in my arm that causes my fingers to bend towards my palm etc.
I guess my question(s) is does anyone have this weird twitching in their head sort of thing?
And how can I get my rheumy to agree I need to be evaluated for CNS lupus?
Ive been on Plaquenil for about 2 yrs now and its not worked for my disease at all. Pain pills have not worked either. I need something new! Thanks. -Lupie Britt