I have CNS lupus. I think I've sent you some messages sharing my experience before. If you have any questions, feel free to send me a message.

I was recently diagnosed with CNS lupus. I will be seeing a rhumoltologist this Thursday 2-7-08. Will let you know after that what he has to say. Brenda

I have Lupus of the CNS, it has effected my spinal column, my memory for years, my personality, my balance, my headaches and my sight. Prednisone is the only thing that has helped so far. I am looking to other options now because the pred use has caused alot of degeneration in my spine and aggravated my osteoarthritis. When I finally got this diagnosis it explained alot of things, like why one day my mind was sharp as a tack, and the next I couldn't even count.

Keeping on, your description pretty much describes me especially whenyou said "like why one day my mind was sharp as a tack, and the next I couldn't even count" except with me I can't remember conversations I have or what I am doing from minute to minute. I feel like Ihave ADHD. It seems to me so unbelievable. What if anything helped your headaches? I have been taking two different Migraine meds and they do not get rid of the dizziness or head pain. I finally found a Rheumy I like and now he thinks I have another bad Autoimmunedisease. I have yet to be on Prednisone.

I have CNS Lupus as well. Like yourself I get dizzy and have a really bad memory. Some days are better than others, but I would hate to see what it would be like without Pred.

I would also like to know what to do about headaches when you have CNS Lupus. I have tried many things different things and none helped. I am at my wits end. Any advice I can get would be appreciated. Thanks, Brenda

Prednisone has helped with inflammation in my brain , that is why I suggest you ask to try it. Also I had a deep seated sinus condition from it for a long time but a month's session on Cipro helped clear it up and I had a hysterectomy which completely put me in control of my hormones keeping them always at the same level, since these changes I no longer have migraines.

I also have CNS Lupus, My doctor have put me off of work right now because I can not function. Some of my systems is dizzyness, shortness of breath, headaches & rapid heart rate and confusion I have been off 2 weeks all ready and still find it hard to even complete a thought. It is as if it really hurts my brain right now to even think or concentrate. Does this make sense to any of You? This is the worse I have ever been and really discouraged that it is taking me so long to get my mind back. I am on prednisone I hope to be able to go back to work soon. About the headaches. I can not find much to help, I do take Claridan D some times a long with the strongest pain pills I can find because of my allergies are effected also and some time that seems to help. I hope we all can give each other advice and an listening ear. Thanks Deb

After reading all this I am wondering why my Neuro is sending me for Neuropsychological testing instead of trying prednisone first. I have beensuffering from allthese symptoms since Oct. with tremors to boot and leg and arm numbness and pain. Anybody have any ideas? The Topomax is not helping.

i have my first appt. this month and i get brain fogg very often. it is really frustrating to be so forgetful so often.

DKennedy,
Before my hysterectomy I had terrible migraines that nothing would touch. Hormones play a major role in CNS Lupus, maybe your hormone levels need to be checked next.
Once I had my hyster and could keep myestrogen at the same level everday, I no longer got the terrible migraines that were totally unaffected by pain pills.
Hope this helps.

I think it is good you are going to a Neuroligist so please keep that appointment. I know we all get discouraged having to keep going for these appointments but the more thay can pin down the areas the Lupus is effecting you the better watch they can keep on you. I hope this is ture anyway. Deb

Keepingon, Thanks for your suggestion. I see my doctor next Friday. I will mention it ot her. I went through the change of life early and have not been able to take hormone supplemnt due to blood clots. So it is sure worth talking to her about.

Deb

Do any of you have problems with seizures or terrible periods with the CNS lupus as someone mentioned that hormones play a role? I'm going in for 72-hr video EEG on Tuesday.

I never had seizures, but I had violent period bleeding, I also have had bleeding problems when I have had surgery..I don't know if they are related.