Lupie Fog

Lupie Fog ~~ Brainfog and Its Signficance  A great site.

 

I’m going to write a little bit about cognitive dysfunction.  It's a subject that many of my Lupie friends are having difficulty with.  But, I can only write about my experiences. 

 

Lately I have been misusing my words.  I just cannot find the right word to describe what is in my mind.  Just this afternoon my daughter, Lauren, made a cup of hot chocolate.  It smelled delicious.  I asked her if there were mushrooms in it.  She said "Mushrooms?"  I said, "Mushrooms."  It didn't occur to me that I was saying the wrong word.  This scared me because usually I would know the word in my head but it would come out incorrectly.  Now I can't even find the right word.

 

But that is not the worst of it. 

 

On many occassions I could not even get my thoughts out verbally.  It was like I was stuttering my words.  I just couldn't get my thought out.  It's even gotten to the point that I am having a difficult time with my thought process.

 

I tell people the same thing over and over again.  Not remembering that I have said the same thing before.  It has gotten to the point where I will say "Have I told you this before?"  after speaking.

 

A real problem for me is getting lost and confused.  It's like a cruel circle that I am traveling.  I get upset and confused when I get upset and confused.  Am I making any sense?

 

I hate it.

 

It is making me very apprehensive.

 

It's not pretty.

 

Cognitive dysfunction is common in those who have Lupus. 

 

Even more common when someone has Lupus and Antiphisiploid Antibody Syndrome. 

 

Can you imagine have all of the above plus Fibromylagia?  Yikes.

 

One of the medications I take is called Namanda, well I think that's the way to spell it.  I am too lazy to get up and look.  But, my point is that it's a medication given to patients with moderate to severe Alzheimer's.

 

A giant YIKES!

 

The following is from SYSTEMIC LUPUS AND THE NERVOUS SYSTEM

 

SYMPTOMS OF CENTRAL NERVOUS SYSTEM LUPUS

 Central Nervous System (CNS)Vasculitis

CNS vasculitis represents inflammation of the blood vessels of the brain. It occurs in up to 10% of all lupus patients, and is the only form of CNS disease that is included in the American College of Rheumatology criteria for defining SLE. Characterized by high fevers, seizures, psychosis and meningitis-like stiffness of the neck, it can rapidly progress to stupor and coma if not aggressively managed. CNS vasculitis is the most serious form of SLE and usually requires hospitalization and high doses of corticosteroids. Infection should be ruled out before treatment is initiated. Seizures occur when injured or scarred brain tissue becomes the focus of abnormal electrical discharges. They may be a one-time occurrence or a persistent problem. Anti-convulsant medications are used to prevent seizures by controlling the brain's abnormal electrical discharges.

Cognitive Dysfunction

At some point during the course of their lupus, up to 50% 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 positron emission tomography (PET) scan shows reproducible blood flow abnormalities. The reason for these symptoms is not known but 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. Spinal taps, brain wave tests (EEG), magnetic resonance imaging (MRI) or computerized tomography (CT) scans of the brain may all be normal. Antimalarials and/or steroids may be useful, but the management of cognitive dysfunction is often frustrating and currently no optimal therapy is available. Counseling and other interventions that assist a person in developing coping skills may be helpful. Cognitive dysfunction may come and go on its own.

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My point is (do I have a point?)  I am getting lost here as I write.  AllI wanted to say is that it's hard to deal with.  I'm wondering if one day I will wake up and be unaware of my surroundings.  Geez, I wonder.  What I wonder more is .... When someone gets like that do they know on the inside what is going on?  Or is every memory and ounce of knowledge gone?

Yes, this scares me.