New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 11/23/2012 12:06 PM (GMT -6)   
I was a bit behind schedule this morning and as I was rushing out the door I grabbed my keys. They weren't there! A quick check of the usual places didn't find them. After a mental review of the last place I'd seen them I discovered I'd left them in a friends car (of course across town) yesterday.

So, I proceeded to call and re-schedule the appointment I'd been rushing to...but rescheduling didn't work and I had to cancel. Then I called my friend and asked what her schedule was like -- she decided it was easiest for her to deliver right away.

Twenty minutes later, as she handed me the keys, she asked where my spare keys were. KaBang!! Spare car and house keys were right where they belonged!!! I could have easily made my appointment and picked up my regular keys without inconveniencing anyone.

Sadly, no, my Lupus-laden brain didn't even slightly consider such a logical idea as spare keys. Previously I would have just grabbed them and gone without a hitch. I hate Lupus!
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 11/23/2012 9:00 PM (GMT -6)   
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.... :(
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 11/23/2012 10:19 PM (GMT -6)   
My main incident was remembering to pull out the paper packet holding the gizzards in the turkey yesterday. I almost forgot.....and I usually never forget. It would have been quite the disaster! Lupus definitely can kick your memory to places is never used to go.

Laura

snowcone
Regular Member


Date Joined Jul 2012
Total Posts : 73
   Posted 11/27/2012 4:22 PM (GMT -6)   
OMG! the same keeps happening to me...the simplest things I cannot remember. Really? Is it Lupus fog? I hate Lupus too!
The offer still stands- John 3:16

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 11/27/2012 8:13 PM (GMT -6)   
Today I couldn't remember the word "fog" when I was driving through it today. :)))
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Butterflake
Veteran Member


Date Joined Jun 2006
Total Posts : 1650
   Posted 11/29/2012 7:17 PM (GMT -6)   
Yesterday I got lost while driving to my PC provider. I've been 100's of times (unfortunately).

lillash
New Member


Date Joined Dec 2012
Total Posts : 12
   Posted 12/4/2012 7:31 AM (GMT -6)   
confused so that explains why i forget things, peoples names and sometimes say the wrong things... Like the day i was talking to a friend and a person went past n i said goodbye to my friend but called her by the name of the person who walked past me? The worst thing thou is when i forget to drop lunches off at school or even picking up the kids!!! I usually write things on my hands everyday just to remind myself if its something i dont usually do or need to gett... Does anyone know if this fog is treatable? All this time i have been kicking,myself when i let the kids down sad

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 12/4/2012 1:26 PM (GMT -6)   
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.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

jstjohny
New Member


Date Joined Dec 2012
Total Posts : 7
   Posted 12/7/2012 4:01 PM (GMT -6)   
I used to be the person that would finish other people's sentence or fill in the word when they couldn't articulate one. Not anymore. Just yesterday the customer service lady at the bank filled in the blank for me when I couldn't remember the word that would end my sentence.

My doctor just told me two days ago I have Lupus. I have been living with Hypothyroidism for the past twenty years, so all my complaints, such as memory loss were attributed to my thyroid. Until last month when I got the Butterfly Rash on my face. It was then he did an ANA Test. At this time he gave me a steroid shot and some steroids to take for eight days. After taking all the steroids my skin started itching and burning all over my body. So another trip was warranted after a few weeks of this condition. I couldn't take it anymore.

That was two days ago. He gave me an RX for Triamcinolone Acetonide Cream USP, 0.1% and is setting up an appointment with another doctor to treat me for Lupus.

At present I am using the cream in the areas that itch and I feel so much better. So far I have slept through the night without waking up to itch and my scabs are heeling, because, I am not scrapping them as much.

To help with my memory loss I am being proactive in my comprehension. That is, now that I am not itching so much I can focus on the things in life that I need to remember and pay attention too. And like the post before mine, from Joy, "Some days are harder than others."

I am a newbie and just learning what I need to learn about this illness so I can live a long life. Surely, there must be a happy medium that exist ... where one can enjoy their life and at the same time have one:)

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2608
   Posted 12/8/2012 6:41 AM (GMT -6)   
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.

SICKOFSULPHITES
Regular Member


Date Joined Aug 2012
Total Posts : 36
   Posted 12/8/2012 9:54 AM (GMT -6)   
PattyLatty cerebral (brain) lupus is incredibly difficult to d/xs,my ex-wife was d/xs with it but she had 4 minor strokes causing small areas of the brain to die.An astute dr. will be able to differenciate brain fog-common in general lupus and the very severe cerebral lupus,this always requires chemotherapy to control ,she had many,many infusion of cyclophosphamide and intravenous prednisolone to bring it under control,she was actually close to death at one point,they where very scary times!!! Having said that not many people have it so severe not trying to worry anyone.Even brain biopsys arent conclusive,apparently.I realise most of you are in USA and are far ahead of us in UK in treatments etc,so if im not up to date apologies.Take care peeps Paul

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 12/8/2012 11:13 AM (GMT -6)   
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!
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2608
   Posted 12/11/2012 9:10 AM (GMT -6)   
Lynwood, I knew of your neurological deficits, but didn't realize that your problems have been so severe. It's to early for me to respond right now, but I'll be back after I get a little more sleep. Thanks.
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

plaquenil, neurontin 1200mg, synthroid, spironolactone, actonel, niaspan, simcor, lunesta, cymbalta 90mg, norco 10, vitamin D, Calcium, Multi Vit. Fish Oil, low strength aspirin

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2608
   Posted 12/23/2012 12:19 PM (GMT -6)   
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
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

plaquenil, neurontin 1200mg, synthroid, spironolactone, actonel, niaspan, simcor, lunesta, cymbalta 90mg, norco 10, vitamin D, Calcium, Multi Vit. Fish Oil, low strength aspirin

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 12/23/2012 12:48 PM (GMT -6)   
PattyLatty said...

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.


Except for the "supportive family" bit, yes, I'll do whatever is necessary.

As far as the measured IQ drop, I have to say that Cellcept put my brain back in order and I'm 90+% back to normal. Don't ever loose hope!
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2608
   Posted 12/23/2012 12:55 PM (GMT -6)   
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.
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

plaquenil, neurontin 1200mg, synthroid, spironolactone, actonel, niaspan, simcor, lunesta, cymbalta 90mg, norco 10, vitamin D, Calcium, Multi Vit. Fish Oil, low strength aspirin

SICKOFSULPHITES
Regular Member


Date Joined Aug 2012
Total Posts : 36
   Posted 12/24/2012 12:50 PM (GMT -6)   
Patty very glad not cerebal lupus! hope u get sorted paul xx
New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, September 24, 2018 12:57 AM (GMT -6)
There are a total of 3,005,988 posts in 329,290 threads.
View Active Threads


Who's Online
This forum has 161816 registered members. Please welcome our newest member, nagawarrior.
218 Guest(s), 1 Registered Member(s) are currently online.  Details
oregonhay