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mviceroy
10-26-2005, 01:24 PM
Anybody out there experiencing the same feeling of not being able to focus, forgetting things and just basically being in a fog all the time?

Mitch
10-26-2005, 07:24 PM
Hi mviceroy! The "lupus fog" - absolutely! At least for me, some days are better than others. I notice it is more pronounced when I am extra tired. I've noticed I "zone out" for a moment here and there. It sometimes makes me nervous. A few strange/funny moments I recently experienced: First. in the shower. I think I stood there in a transe for quite some time without realizing it. Just yesterday, I was kind of upset w/my son, and being 1/2 Italian, I was talking w/ my hands and ended my sentence while pointing at something. Well, as if I was suddenly hit in the head, I stood there for about 15 seconds still pointing long after I stopped talking and became suddenly aware that I had "zoned out" again for those few seconds. I do find others my age sort of complaining about similar feelings - maybe it's part lupus, part age (at least in my case!)

Mitch

Neicee99
10-27-2005, 05:51 AM
Hi
Absolutely!! I actually go into rooms and stand there for a minute or so and yell out to my family, "does anyone know why I'm in here"! :roll: That happens a lot. Currently, the brain fog is going on and the forgetfulness which can be really annoying. The kids say I repeat myself as well.

Denise

mviceroy
10-27-2005, 02:33 PM
thanks for your replies. I'm glad I'm not alone.

hatlady
10-29-2005, 05:02 AM
No, you're not alone, sweetie. We're all there at some point or another!

I think the brain fog is the most frustrating thing about lupus for me. Usually happens in the middle of a phonecall when I NEED to remember what I did on a project. (Project? I was working on a project? um....)

I think stress and tiredness both make it worse.

The only good thing - the clear moments are treasures....

newmommy
10-29-2005, 03:45 PM
I know just what you mean, I used to be very sharp and now I'm so foggy and I find that my husband will tell me something and not even five min later i'll compleatly forget, and if I write it down I forget I've written it down or I loose the paper :oops:

so you are not alone!!!!lol

mviceroy
11-06-2005, 09:02 PM
They started to give me Aricept, but I really don't see any Major changes. I still take the wrong highways home, forget to get off the right exit and easily forget why I'm mad at my husband, which he loves very much! lol

jothebrit
11-07-2005, 11:06 AM
I swear I just stood in a store and didn't speak for 5 min. the assistant looked at me really funny, so was my son! :shock:
Then I dropped him at the orthodontist and went to the bank and carwash, next thing 90 minutes had passed and he was waiting for me and was not pleased. I don't remember it taking that long. Have any of you mentioned this to a doctor? Is this normal? My grandmother has alzheimers and dementia so should I be worried? I'm 37, rapidly balding and bright red in the face, but still have 3 young kids at home that need all my attention.
Going Loooony!
Jo :roll:

mviceroy
11-07-2005, 02:18 PM
My Rheumatologist says it's Central Nervous System Lupus that's affecting my memory. It's called Cognitive Dysfunction. Here's some info:
As always, the bottom line is there is nothing they can do.


At some point during the course of their lupus, up to 50 percent of lupus patients describe feelings of confusion, fatigue, memory impairment, and
difficulty expressing their thoughts.
This collection of symptoms is called cognitive dysfunction and is found in people with mild to moderately active SLE. These symptoms may be clearly documented by neuropsychological testing, and a newer neurodiagnostic test called the single positron emission computed tomography (SPECT) scan shows reproducible blood flow abnormalities.
The reasons for these symptoms are not known. It may have something to do with changes in how a group of chemicals known as cytokines are handled or may be related to certain parts of the brain not getting enough oxygen.
Other tests including:

Spinal taps,
brain wave tests (EEG),
magnetic resonance imaging (MRI) or
computerized tomography (CT) scans of the brain may all be normal.
Cognitive dysfunction may come and go on its own, so the management of cognitive dysfunction is often frustrating and currently no optimal therapy is available.
Antimalarials and/or steroids may be useful.
Counseling, cognitive behavioral therapy and other interventions that assist a person in developing coping skills may be helpful.

hatlady
11-07-2005, 02:30 PM
Thanks, I think, mviceroy!

I'm going to be getting an MRI soon - as I've been foggier than normal lately. Actually, when I complained to my rheumy, I was surprised she didn't put me on prednisone. (a bit relieved she didn't, but then...).

So much of what is said above rings so true! I feel like my brain is wrapped in cotton sometimes - hard to get things in. Hard to get things out. :mad: FRUSTRATING!

I find that writing things down, keeping lists, having calendars on my palm pilot that beep when i'm supposed to be somewhere, etc., all help a bit. But then there's times.....

It is nice to know that we're all in it together - I keep focusing on the clear moments, and trying to laugh about the other times.

mviceroy
11-07-2005, 06:54 PM
I'm sorry, I sounded like such a downer, but I just get frustrated when I hear there's nothing you can do about it. They do tell you that you should do word puzzles and other things to stimulate your mind. I just wished there was a magic pill or just trying to shake that feeling out of your head for an easier solution!

jaime
11-07-2005, 11:15 PM
Hi all!,

Man! i thought i was just spacey or had "too much on my plate"! i do experience this memory loss alot. i carry around a small notebook in my purse to write everything from shopping lists to things i need to tell people so that i can jog my memory. what's unfortunate though is when i get to the paper and i can't remember what i was going to write!!! it's the most difficult when i ---ok forgot what i was going to say, seriously--- oh yea, when i am around other people or a lot of background noise because i can't focus on what i am trying to say and i feel like people think i am a space-cadet!

TracyDawn
11-08-2005, 11:37 AM
DEFINITELY!!! I'll go into a room and then think "Why am I in here?" then turn around and go back to where I started, remember what it was and do it all over again. LOL It's awful! My dh and I have had many fights about him telling me something and I agree to whatever it is and then forget we ever had the conversation. He's learned tho that I can't help it, it's just part of the "new" me. Now if he has something I really need to remember, he writes it down and makes sure I see it. Then I check off what I've gotten done.
The worst is at work tho. I work in accounting and every month we have to close the books for the month. I have to do all the end of month entries. A couple months ago, I SWEAR I did the entries but when the accountant came NOTHING had been done. It was awful. I told them the computer must have ate my homework. So you are definitely not alone. I did tell my dr once that I think I have the beginnings of alzheimers and I was not joking. My granny had it and we think my grandma is being affected by it a little now. She said well you are kind of young but anything is possible, especially with you. She says I am a special case. ;)

Suzie
11-08-2005, 03:58 PM
Hi, I'm Suzie and I am waiting for a dx. I see my doctor tomorrow but I went to the hospital and picked up my lab results. I got in a hurry and had to peek. It's hard for me to make head or tails of the #'s but the pattern is "speckled". Not sure what that means. My doctor suspected Lupus a couple of years ago but I have changed docs since then. I have some symptoms but mainly red face and trouble with my hands and joints. I am not sure really what to ask but yes, I am in a fog. I had noticed at times that things I had done so many times I suddenly had to stop and think, "what am I suppose to do". Sometimes it is a lapse of time from a few seconds to a little longer. Hope to hear from some of you.
Suzie :)

Saysusie
11-09-2005, 10:56 AM
Hi Suzie :lol:
Welcome to our forum. As you can see, many of us have to deal with and are familiar with the "Brain Fog" - those frustrating memory lapses where, like you said, we forget how to do something that we had once done by rote!
There are several explanations about how to understand your lab results in several forums on this site. But, here is a very good web site that explains the tests and the results:
http://www.hamline.edu/lupus/articles/Laboratory_Tests_Used_in_the_Diagnosis_of_Lupus.ht ml

Here is some information that I found from the Lupus Foundation about the lab tests for Lupus, blood work and diagnosis:
ANA:
The immunofluorescent antinuclear antibody (ANA or FANA) test is more specific for lupus but it is not a diagnosits test which says yes or no to a diagnosis of Lupus by iteself! The ANA test is positive in virtually all people with systemic lupus. If the ANA test comes back negative it is considered a normal result, and it is very good evidence against lupus as an explanation for the symptoms. If the ANA test result comes back above the normal range the test is said to be positive. A positive ANA test by itself is not proof of lupus. The ANA is only a test and like a high cholesterol value, a positive ANA doesn't necessarily equate having a disease.
The ANA test may also be positive in individuals:
with other connective tissue diseases; without symptoms; being treated with certain drugs, including procainamide, hydralazine, isoniazid, and chlorpromazine; with conditions other than lupus, such as scleroderma, rheumatoid arthritis, infectious mononucleosis and other chronic infectious diseases such as lepromatous leprosy, subacute bacterial endocarditis, malaria, etc., and liver disease.

Because it can be positive in conditions other than lupus, the results of the ANA test have to be interpreted in light of your medical history, as well as the current clinical signs and symptoms.
ANA test reports include a titer (or strength) of the antibody. The titer indicates how many times an individual's blood must be diluted to get a sample free of anti-nuclear antibodies. Thus, a titer of 1:640 shows a greater concentration of anti-nuclear antibodies than a titer of 1:320 or 1:160. A high titer of this antibody (greater than 1:1280) is usually associated with rheumatic disease but has nothing to do with how active a person's lupus is. Therefore, it is not necessary to repeat the ANA in someone who has lupus. Other blood tests (complement factors C3 and C4, anti-DNA, the complete blood count, and urinalysis) are the best laboratory index of lupus activity.
Complement is a blood protein that, with antibodies, destroys bacteria. It is an "amplifier" of immune function. If the total blood complement level is low, or the C3 or C4 complement values are low, and the person also has a positive ANA, some weight is added to the diagnosis of lupus. Low C3 and C4 complement levels in individuals with positive ANA test results may also be indicative of lupus kidney disease.
Tests of individual antigen antibody reactions have been developed which are very helpful in the diagnosis of SLE. These include the anti-DNA antibody test, the anti-Sm antibody test, the anti-RNP antibody test, the anti-Ro antibody test, and tests which measure serum complement levels. These tests can be further explained by your physician.
Detection of antibodies to phospholipid, such as the anticardiolipin assay or a positive lupus anticoagulant can be cause for concern especially if the patient has evidence of blood clots (thromboses). The most common manifestation of this is phlebitis or inflammation of the vessels in the calves of the legs. Presence of these antibodies in the absence of any abnormal clotting may require simple aspirin therapy to mildly thin the blood. However, evidence of abnormal blood clotting may require that the patient take a blood thinner like heparin and later warfarin to prevent blockage of small and large blood vessels. When blockage occurs in the lung or the brain it can be very serious.
Laboratory tests are most useful when one remembers the following information.
If an individual has signs and symptoms supporting the diagnosis of lupus (e.g., at least four of the American College of Rheumatology criteria), including a positive ANA, the diagnosis is confirmed and no further testing is necessary.
If a person has only two or three of the ACR criteria, including a positive ANA, then the ANA supports but does not confirm the diagnosis. In these cases, unless more specific tests are positive (e.g., anti-DNA, anti-Sm, anti-Ro) the diagnosis of lupus is uncertain until more clinical findings develop or other more specific blood tests, as cited above, become positive.

Many patients may present with vague symptoms and only a positive antiphospholipid (APL) antibody or a lupus anticoagulant. A person may only have positive antiphospholipid antibodies and be diagnosed with primary antiphospholipid syndromeinstead of lupus. People with primary APL syndrome might still have problems with premature clotting of blood and require treatment.
Physicians will sometimes also perform skin biopsies of both the individual's rashes and his or her normal skin. These biopsies can help diagnose systemic lupus in about 75 percent of patients.
A kidney biopsy is sometimes required if urine or blood evaluations show evidence of kidney disease. Kidney abnormalities vary with each patient. A biopsy and special preparation of the biopsy sample is required to give the doctor an idea of the degree and type of kidney injury. Using the biopsy results the doctor can tailor therapy for each individual.
The interpretation of all these positive or negative tests, and their relationship to symptoms, is frequently difficult. A test may be positive one time and negative another time, reflecting the relative activity of the disease or other variables. When questions cannot be resolved, consult an expert in lupus.
When someone has many symptoms and signs of lupus and has positive tests for lupus, physicians have little problem making a correct diagnosis and initiating treatment. However, a more common problem occurs when an individual has vague, seemingly unrelated symptoms of achy joints, fever, fatigue, or pains. Some doctors may think the person is neurotic. Others may try different drugs in the hope of suppressing the symptoms. Fortunately, with growing awareness of lupus, an increasing number of physicians will consider the possibility of lupus in the diagnosis.
A patient can help the doctor by being open and honest. A healthy dialogue between the patient and doctor results in better medical care, not only for people with lupus, but for anyone seeking medical treatment.

To whom should a person go for a diagnosis of lupus? Most individuals usually seek the help of their family doctor first, and this is often sufficient. However, when unresolved questions arise or complications develop, another opinion from a specialist may be advisable. The choice of specialist depends on the problem. For example, you would see a nephrologist for a kidney problem or a dermatologist for a skin problem. Most often, a rheumatologist or clinical immunologist specializing in lupus is recommended. Referrals can be made through your family doctor, the local medical society, or the local Lupus Foundation of America chapter.
Try to be as informed as you can about Lupus, its symptoms, its treatments and its medications. This is the best way for you manage your disease and to be active in your treatment!"
Let us know if you need any other information or if we can help you in any way
Hopefully, this will be helpful to you.
Once again...Welcome
Peace and BLessings
Saysusie

SoleSinger
11-09-2005, 11:29 AM
I KNOW the brain fog thing!!!!!!! Sometimes I stop and ask "Where am I?" Because I just feel lost... I could be right in the middle of doing whatever it is I am doing and not remember what I am doing... Like I'll be typing an invoice and not even reach the end of a sentence before I forget where I am... Weird, huh?

Is it in any way RELATED to Altzheimer's or anything?

Suzie
11-10-2005, 08:25 PM
Thanks Saysusie for all of the info. I did go to my PCP yesterday and I was a weak positive plus a speckled pattern. She has referred me to a Rumey.....no appt is set at this time. Maybe tomorrow. I can tell another "flare" is coming on and I see little blisters coming up on my thumbs. The joints in the hands are really swollen and tender. I have been given a lot of extra work on my job and putting in more hours. STRESSFUL!!! YIKES!!! I really have enjoyed really all the letters from everyone on this site. I feel really encouraged.
Suzie :D

catlady4520
11-10-2005, 09:01 PM
Unfortunately the brain fog seems to happen often with lupus. I have CNS vasculitis and thought the brain fog was exclusive to that but as you can see on the boards, even people with the kidney form of lupus experience the same thing. (My husband teased me that it's from too much blonde hair dye!!!!!!!!!!!!!!)
Hope things improve but now that my flare is getting under control, don't seem to have as much brain fog. Good luck!