CNS LUPUS

Lupus is a disease where a persons immune system becomes confused and attacks their own healthy tissue.  It can range from mild to deadly.  Most people are some place in the middle, at least for most of their illness. Lupus

The treatment for lupus is by use of medications that have their own severe side effects.  This includes steroids (not the type that athletes take) that cause damage in more ways that I know but one is weight gain and damage to muscles.  Doctors also mentioned arteries.

Most of the time, my illness has been moderate.  For a while though it included vasculitis which may or may not have been life threatening.  I was pretty darn sick.  I took high dose of Prednisone, up to 90Mg a day and was on 6o to 30mg for a long time.  Often going back up to 30Mg.

I was on 10 to 20Mg even longer.  Then I started taking methotrexate at low doses but high doses for lupus.  This drug is toxic, it kills more white blood cells than it does red.  It is used as chemotherapy in cancer patients but at much higher doses.

The aggressive treatment started after several episodes that were first diagnosed as Bell’s Palsey but later changed to “facial muscle weakness” as my test for Bell’s where negative.  Then I woke up one morning with both sides of  my face paralyzed and that got the doctors concerned.

After the first case of facial weakness, I thought I noticed problems with memory.  Nearly everyone with lupus describes this as the “lupus fog.”  I’ve never heard a doctor acknowledge it though.  Hard to test for fog.  :)

At work, I noticed problems with remembering faces.  I would have someone ask me for help on a problem and leave their work with me.  I’d try to take it back and I didn’t know who it was I had helped!  I couldn’t return it.  I didn’t think much of this at first.

One day, I mentioned it to my lupus doctor, a rheumatologist and she grimaced but didn’t say anything.

A few years later, I was amazed to find out there was an actual name disease related to this.  Its one of those really hard ones to say and spell.  I can’t do either but I can copy it. :)  It is called Prosopagnosia.

Prosopagnosia or Face Blindness

There is a specific area in the brain that we humans use to recognize faces.  Dogs have it too but its much larger.  My guess is most social animals have this, though I’m not certain of that.

Years later, the doctors finally gave me a memory test.  She saw me having problems remembering the difference between types of UV rays and some other things.   The doctors said my memory was fine after the test but they misinterpreted at least one thing.

Part of the test was an IQ test, though I didn’t know that.  He gave me some numbers to add up and I couldn’t do it.  I couldn’t do it because he told me the numbers and I couldn’t remember the numbers.  Numbers become a jumble to me, same for letters.  I can only get them if someone says them very slow and sometimes not then.  These numbers were part of the IQ test and lowered my score to 105 which is dead center normal but I missed all the math!  he commented in his report that I did quite poorly there.  I started to contact him and tell him I couldn’t remember the numbers.  I wonder if that might have changed the findings.  I regret that I didn’t do that.

Besides, its obvious to me, I’m a genius.  :)  I can’t spell, I can’t remember, thus I must be as smart as Einstein, right?  I like to think so.  HAHA.

The test found I had problems with facial recognition but still no one said anything about Prosopagnosia to me.  Not really much they can do about it but it could be diagnostic toward Lupus with central nervous system (CNS) involvement.

The test also found that I had problems with spacial properties.  They’d give me something to draw.  I thought I got it mostly right but I guess not.  I know I struggled with it.

The test couldn’t determine if the problems were developmental, that is I was born with them or they were acquired.   One way to acquire such things would be via stroke, or micro infractions in the brain.  Micro infractions are often called mini-stoke.  I only heard that word once related to me though.  The night I went to the ER with double face failure.

That’s what I call the muscle weakness in my face.  Its just my way to make fun of it and lighten it up a bit.  The doctor in the ER called it a micro-infarction.

I’ve also had TIA or transient schemic attacks.  I think this means when something temporally blocks blood flood to an organ.  Usually the brain or the heart and can result in heart attack or stroke.  I however have had them in my eyes.  That got me more another trip to the ER and my most recent MRI.

However, it only happened twice.  That is twice that lasted more than 30 seconds.  I’d see black spots.  Unlike a floater, they lasted longer and they were not clear.   Once I got them in both eyes at the same time and I really should have done something the second time, I should have called my ophthalmologist.  He told me to call if they lasted longer than 10 minutes.

I’m hesitant to call doctors because so many test have come back negative or “not impressive.”  One gets tired of being treated like they are making it up.

My last doctor didn’t do that.  She insisted if I thought something was wrong to do something.  That just because a test is negative doesn’t mean its not happening but that it could be minor enough that they can’t detect it.  This is especially true of mini-strokes.

That’s why I’ll never put up with a doctor that treats me badly again.  Or treats me like a hypochondriac.   That would make a good topic for another story I think.

Today I found a website with a free online test for face blindness.  Actually two test and I failed them both.  Well, on facial features I scored 61%.  The page said that most people score 85%.   It went on to say a score below 65% could indicated problems in facial recognition.

I then took another test using famous faces.  I did worse on this one but I thought I did better.  Here are the results for that test:

Out of 30 faces, you correctly identified 15.
You were familiar with 27 of the people in this test.

If we exclude the ones you were unfamiliar with, you got 56% correct.

The average person with normal face recognition was able to recognize about 85% of the faces they were familiar with. If you missed more than half of the faces you were familiar with, this may indicate face recognition difficulties.

I actually passed this one but just barely.  :)  On both of them, I didn’t too badly and that doesn’t surprise me as I don’t have nearly the problem of some people I’ve talked with.

If you’d like to take the test visit this site:  http://www.faceblind.org/facetests/index.php .

The worst case I heard of was a bit heart breaking.  This woman had children in a private school.  They were required to wear uniforms and when she went to school to pick up her children she couldn’t pick them out.

We have two neighbors that I cannot tell apart.  One is nice and one is a jerk.  I never know which one I’M looking at.  :)   When I would see someone from work, I was unable to recall their names or I would be unsure if I knew them.  Sometimes I only knew I worked with them but nothing more.

I also found that if someone changes their hair, I may not be able to recognize them.  These are both indications of face blindness.  In my case, its pretty mild but for some it can be devastating socially.  Many don’t even know what they are going through is abnormal.   If you’ve been this way all your life, it would be hard to know its unusual.

I’ve found other situations where I run into that.  My problem with facial recognition started after my first case of facial weakness.  So I thought something was wrong.   There have been many other things though that I thought were normal.  Most of them I no longer remember.  I’d only find out they were not normal after a doctor would ask if I had this or that going on.  I would say yes and that’s when I’d learn that it was abnormal.   That has left me with the problem of knowing what is normal and what is not.

Even for the mild and moderate cases of lupus, there are problems.  It also tends to be cumulative over time.  Lots of little things can add up to be real problems and shorter life spans.

The complete name for Lupus is Systemic Lupus Erythematosus (SLE).

Tagged with: Health • Lupus • Lupus and I • Lupus Fog • muscles • SLE • TIA • Vasculitis

Filed under: Lupus

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