is the major disease you are talking about
, Patty. www.lupus.us.com/lupus-cns.html
10% of people with Lupus develop it. This is physical involvement of the brain, and has a lot more symptoms that what I've experienced. You'd be experiencing a lot more than memory loss with CNS Lupus.
What I had is more often called Cognitive Dysfunction
. It is a lot more than memory loss, actually the starting post of this thread had nothing to do with memory loss, I just expressed it poorly. My cognitive dysfunction was fairly major, except I could still prepare food, take meds, and shower by myself. I could not carry on a conversation, I would loose track of the subject before you'd finish your sentence, I couldn't follow a 3 minute radio topic, and certainly not a 20-minute sitcom or a book. I couldn't drive -- wouldn't recognize things around the block even after living here 30+ years, had trouble with the stick shift I’ve always driven. Not only words escaping me, but the whole concept of my sentence was gone about
3 words into saying it. It was a lot like my brain was locked underwater and I simply couldn't access it -- for months at a time.
Neurological testing is like an all-day IQ test. Doing mental exercises, plus a few tests of hand-eye coordination/speed. It was a relief to get the results, also frightening on the other hand. Mine said, in the most simplified way of expressing it, that I had a 20-point drop in IQ. (They provided a 8-page report that explained in much more detail.) Certainly proved something was seriously wrong and that I had not imagined it.
I was lucky -- between Prednisone and Cellcept my Cognitive function has improved -- probably to 95% of what it was prior to Lupus. I can do most of my life, and don't feel so much like a stupid rock. Much of my vocabulary is back, and I can use it appropriately! The worst years were 2005-2008, then about
2 years of Cellcept. Now I’m completely free of Prednisone and Cellcept.
Now, as to what I was talking about
in the first post. I didn't "forget my keys" or "loose my keys". What I did was leave them somewhere stupid, but I knew where they were. The "I Hate Lupus" part was that instead of thinking thru the issue (at formerly normal light-speed), grabbing the spare keys (kept only 2 ft away), and going -- I panicked & my heart was racing. Called to cancel the appointment, called to have my keys brought to me, never even considered the idea of spare keys, heart racing, etc. Much different than forgetting something.
Now, Lupus Fog
-- I don't think of this a simple forgetting either. It's more the times when the brain just doesn't kick in, we skip over the reasoning part of the process -- not nearly as pervasive, but comes & goes like fog - some days or hours it's sparse fog, other days the whole brain is clouded over and sleeping is much more successful than other activities. We do stupid things and don’t recognize how stupid they are – they seem normal at the time. Like putting the ice cream in the refrigerator, or the kinds of things people mentioned in this thread.
Both the Cognitive Dysfunction and the Fog can be improved somewhat by the 3 major “life conditions” we need to maintain – healthy food, deep restorative sleep, and moderate exercise. When I fail, even for just a day, at any of these, the fog creeps in quickly! Another thing is finding puzzles to exercise the mind – crossword puzzles, Sudoku, etc. The AARP web page talks about
these…they really do help. I try to do at least one a day.
That said, I believe "white matter disease" is a fairly normal result of aging. It's a catch-all phrase describing any kind of brain lesion. www.ehow.com/about_5038561_white-matter-disease-elderly.html
I don't think it's anything to worry about
I hope your neurological testing is as helpful as mine was. It brought me a huge sense of relief that I wasn’t imagining things and that I didn’t have to beat myself up for it – it was truly beyond my control. Even if they don’t find anything, check into things to strengthen and exercise the mind – they are helpful, I promise.
Best wishes, sorry this got so long!
Lynnwood, Lupus & Sjogren's ModeratorDIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde