New...Anyone else with SLE brain involvement?

[tandarat]

Hey all....

I was diagnosed last year with systemic lupus with extensive CNS involvement. Looking back, I have had lupus for at least 10 years, but what symptoms I recognized were either diagnosed as something else or ignored. My symptoms became more severe during and after my pregnancy in 2003, and I began searching for answers. Though my gp was convinced I had some kind of autoimmune disorder, finding a rheumatologist who would actually take a "chance" and diagnose me was nearly impossible. My bloodwork showed definite abnormalities but it didn't point to anything specific if you looked at the labs individually. Putting all the labs taken over the previous year made lupus the obvious choice, to me AND most of my docs, but the rheumies weren't willing to do it. It was only after I developed antibodies to my brain, causing seizures and a whole host of other neurological issues that all the specialists I'd been running around to see the urgency of my condition. I finally found an excellent rheumatologist who gave me a tentative dx the first day pending confirmation through bloodwork and put me on a high dose of predinsone (100mg ) to stop the progression, which was frighteningly rapid. Final dx came 2 weeks later, and I was immediately sent to the hospital for rituxan treatments. How he got the insurance to pay for it is beyond me, but, like I said, he's good . I swear this is a miracle drug...my tremors slowed and my speech improved dramatically within a few days of the first treatment. It has been a year now since those initial treatments, and I've recovered enough to return to work (a new job - the old one fired me after I came back from disability...illegally, but I think it was a gift, actually, my new job is much more suited to me and very understanding of my condition and disabilities). I live *almost* a normal life, except for the seizures, memory issues, weakness that shows up at the worst times, ditto for the speech and reading problems, etc. Lupus flares also cause all the symptoms to return, but so far I've been fairly lucky - I made it the full six months between rituxan treatments last time (actually made it 7 before symptoms got bad enough to go back in), and have just started a flare after working too much a few weeks ago. my neurologist said she'd never seen anyone as sick as I was for as long as I was recover enough to return to work, so I feel pretty lucky.

Anyway, I'm just looking for someplace to come and chat with people who understand the frustration of brain and neurological dysfunction...the lupus boards are great, but most have not had as severe neurolgical involvement as I have, and the experience is hard to understand unless you've been through it. I'm also trying to get some suggestions on how to best deal with strange memory problems, if there is a way to control my partial seizures better, and some help overcoming some of the more "scary" symptoms I experience...problems swallowing, heart arrhythmias, problems with vascular tone, etc.

Sorry to ramble on like this....I do that sometimes .

[slinkyplinky]

Hi, just saw your posting. I also have SLE, & etc. I have cranial nerve involvement rather than central nervous system involvement. I will write a note later because I have an appointment. Watch for it! God bless.