I hate Lupus!

That lupus fog! It's annoying how it messes up things.

(((((hugs)))))

Today I couldn't remember my pastor's name. I've only known him for 8 years.... :(

OMG! the same keeps happening to me...the simplest things I cannot remember. Really? Is it Lupus fog? I hate Lupus too!

Yesterday I got lost while driving to my PC provider. I've been 100's of times (unfortunately).

I don't think the fog is treatable. I haven't seen any info on it yet.

But you can keep a to-do list in your pocket with a small pen. Write down anything you need to remember and check it constantly. I keep a calender on my frig, on my bedroom wall, and in my purse to keep track of important things. Post-it notes help too.

Some days are harder than others.

Lynwood, can you explain the difference between lupus fog and lupus brain disease? I recall that some time ago you had some neurological testing but I don't recall the results.

I recently had an MRI of the brain because of my concerns about my memory. The results showed mild to moderate white matter disease and a small thalamic stroke. I am being scheduled for neurological testing.

I have never researched lupus brain disease and doubt that what is going on with me has anything to do with lupus, but after reading (and identifying with) your post, I wonder.

I'm older than you (63) but know how incredibly frustrating this can be. I'd appreciate your opinion.

CNS Lupus is the major disease you are talking about, Patty. www.lupus.us.com/lupus-cns.html about 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!

Paul, I'm confident that I don't have cerebral lupus.

I've had a stroke in the left thalmus and have mild atrophy and moderate small vessel ischemic disease. My internist believes the contributing factor is lupus and or a genetic marker in my blood that shows I have a 10 fold increase in the likelihood of heart disease, which also translates to vascular disease of the brain. I tend to believe is the latter. I wasn't surprised when the marker showed up in a VAP test a few years ago. Both of my parents, both grandmothers and my grandfathers all died of either heart disease or stroke and my dad and his grandmother had Alzheimer's. The niacin I take as a preventative should also help with brain disease.

I think the stroke happened a year or so ago. It was then that I stopped knitting after years of daily nearly compulsive knitting. Language difficulties also started at about the same time. I was raised in Latin America and grew up bilingual. I asked a Mexican friend if she had noticed my Spanish getting worse and she said yes, that she had noticed it about a year ago. I find myself lapsing into English, which i've never done before about the same time, multitasking and coping have become frustrating.

Forgetfulness, difficulty finding words, and losing my keys has come on slowly, probably as a normal result of aging and atrophy, but it has become much worse in the past year.

When I got the results, my first reaction was affirmation of what I had been telling my doctors for some time. Then, a week or two later came a brief moment of grief, depression, and fear, but that lasted only for a day. Acceptance of reality is how I've dealt with lupus and how I'll deal with this. It's likely to progress but thankfully I have a supportive family, and the ability do do what's necessary to be as healthy and active as possible.

I believe you're doing the same thing, Lynn. The neuropsych testing is scheduled for April, and like you, I expect my IQ to have dropped significantly. I'll let you know how it goes.

It feels good to get this out, especially in a setting where I know folks will listen and understand.

Here's wishing everyone a very Merry Christmas and a happy and healthy and pain-free new year!

Pat

Sorry about the "supportive family" bit, Lynn. I do hope you have a support group of some kind.

I took Cellcept a few years ago and felt better and like you, my mind cleared up. I had to stop it when it affected my kidneys. Double edge sword. But I'll never give up.