View Full Version : Cerebal Lupus
03-18-2012, 10:57 PM
My Doctor thinks I may have Cerebral Lupus. I'm scheduled for a MRI this Wednesday. Does anyone know of this form of lupus?
03-18-2012, 11:05 PM
Hi Mary Jane,
That's a new term to me, but I am familiar with Central Nervous System Lupus. I wonder if it's the same thing?
Good luck with the MRI. Let us know what you find out.
I can't be 100% sure but I believe it is a subclass of CNS that simply affects the brain. It causes inflammation which in turn can cause seizures and many other issues. I am considered having CNS lupus but would also fit in this catagory. I am so glad you are having it looked into.
03-18-2012, 11:30 PM
I've had a couple seizures recently...they were very strange...I simply lost time. On my daughters birthday, I had a strong aura.. I put the candles on the cake, she was opening her gifts...the next thing I was aware I was getting ready to cut the cake...I then said why am cutting the cake she hasn't blown out her candles and we haven't sang to her yet. I was then told that had he...but I didn't remember a thing. I had a seizure about 11 years ago, but the doctors took me off the sexier Meds about 4 yrs ago. I forgot, I have also been diagnosed with antiphosphlipid syndrome...and now high blood pressure.
03-23-2012, 12:05 AM
Had my MRI yesterday, will get results on Monday. Think good thoughts.
03-23-2012, 10:12 AM
Oh my gosh! That happened to me! I was getting ready for the day, had very bad pain in my head, and the next thing I know I was coming in and out of awareness in the hospital. I lost big chunks of time for 2 days! It has scared me so much. Thanks to the people on this board, I am looking for a Neurologist now. Have you heard anything about your MRI? Please keep us posted. Sending good thoughts your way.
03-23-2012, 08:51 PM
Eli...did they say it was a seizure? My first seizue was about 11 yrs ago. I was in a car accident. I didn't become aware of anything until I was at the hospital in the ambulance. I'll get the results on my MRI Monday morning. I'll keep u informed.
03-24-2012, 10:28 AM
No, the ER didn't know what to do with me. They just want me to see my rheumatologist. They gave me I've steroids and pain meds, but to be honest I don't remember most of that visit. I apparently also had a fever. I've just been doing my own research and reading and all the symptoms I'm presenting with indicate cns involvement. Will know for sure when I see rheumie, and have been told he will likely refer me out to neurologist so I'm trying to get an appt with him too. This is scaring me to death, and the pain in my head is excruciating and never goes away. Thinking of you and am anxious to hear what your MRI showed!
03-25-2012, 01:06 AM
I have cerebral lupus. I have severe short term memory loss and was in a coma for eight weeks in 2009 with an infection. I was diagnosed in 2010 and still have many problems. It affects your brain and spinal column. I have rnp profile so I have symptoms of three autoimmune diseases so I'm not sure what each affect but I take arceptra which is an alzheimer drug to try to improve my memory. I have many problems with walking and talking, just moving in general. I guess it can bother each person in their own way. Mine was severe and is rare to happen in this matter. Good luck with your tests!
03-25-2012, 05:26 AM
welcome to your cyber family.
we are here because we need each other.
03-26-2012, 10:33 PM
Ok, so the results are in.....the MRI showed abnormalities in th right frontal lobe. They listed MS, possible strokes, inflamed blood vessels, and the one that really bothers "dementia". Any comments out there?
03-26-2012, 10:35 PM
And I forgot to say, my doctor is sending me to Stanford for more tests
03-27-2012, 07:38 AM
I don't have much input on the subject, I'm a new dx for just SLE Lupus and Systemic Sclerosis. I'm sorry to hear about the cerebral lupus but glad you are taking action. Prayers your way!
03-29-2012, 01:52 PM
Hi Mary Jane,
It's good that you are getting some action taken on this. I live on the Central Coast, and I go up to San Francisco to see specialists at UCSF.
I've had several MRIs, but they always show nothing, so my local neuro just proclaims that I have nothing wrong and drops it.
Our moderator Rob has both Lupus and MS, and he deals with it quite well. The frustrating thing is that so many of these AI diseases like to mimic each other, so it is really difficult to find out just what it is that we're dealing with.
I hope that the docs at Stanford have a quick answer for you.
Keep us updated!
04-04-2012, 10:51 PM
Got my appointment with neurologist in Stanford...April 30th....think good thoughts.
04-04-2012, 11:15 PM
i wiil keep you in my thoughts.
lets hope they find something positive.
my neuro tests were non conclusive.
so im in a stalemate.