How thick is the fog?

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Agmaar
Regular Member


Date Joined Jan 2009
Total Posts : 376
   Posted 8/7/2009 2:06 PM (GMT -7)   
So I was reading Stacey's post and ... well .... I could have written the stuff about cognitive dysfunction.  Like Stacey - I know I've really been struggling.  For some time I've been talking to my pARNP and Dr about how we could figure out - more objectively - just where things are at.  You know .... just how thick is the fog?
 
First - a couple of differences.  I've had chronic Lyme Disease and sleep apnea.  People in the CFS and LD world have "brain fog" rather than "Fibro fog".  I think it's basically the same stuff.
 
So I started off with a neuro exam that included MRI and EEG.  I was not having a great day and the Neuro could see I was having problems.  So he referred me to a neuropsychologist for testing.  Neuropsychologists get post doc training and their specialty is identifying - and quantifying - just where cognitive deficits are.  In some cases they are able to identify medical conditions and are able to determine if deficits are depression related or not.  The neuropsych test is a medical procedure and is not considered psychological testing.  An important distinction cause the test will probably be covered by insurance.  Most ins. won't cover psychological tests. 
 
They use a whole battery of standarized tests.  Like 6 - 7 hrs.  Kind of like a SAT on steroids.  They evaluate your total mental functioning - attention, memory, processing speed, math skills, vocab, executive funtions like orgainizing and more. 
 
So when you get thru - a week later you get the results.  It gives an objective measure of where/ how much any deficits are.  In my case, I had deficits in problem solving and very severe deficit in processing speed.  I thought the problem was memory, but it turns out it's processing speed.  There was other stuff that didn't reality check either. 
 
I've had a very good academic background, Master's, and worked as a high functioning engineer for 35 yrs.  So the neuropsych put it in perspective this way - "If you'd had a stoke, came in to get these tests to see if you could go back to work, and had results that looked like this - I'd tell you no."  He said he's going to do a very detailed write up and say that my combination of deficits is disabling.
 
So, one thing Stacey could do is the neuropsych testing (or anyone else that needs to know what's going on).  You're justing starting out and wish to pursue a career that requires a high level of functioning.  Rather that wonder - and worry - about it, it would be better to get some test results.  Then you will have objective information that you can use to make realistic decisions about your situation.
 
It's better to know, right?  Making realistic plans is far better than getting totally discouraged and giving up, or being unrealistic and expecting a fairy tale ending.
 
Life isn't fair and doesn't come with guarantees.  For me it's definitely "Plan B" time.  My wife took it harder than I did - but I've had to deal with the problems day in and day out.  The challenge is still the same tho - how do I make the most of what I've got.
 
 
 
 
Rich
 
Lyme, anxitey, depression, chronic C. Pnuemoniae
 
"... expect the unexpected ..."  (O. Wilde)
 
"I am an old man and have known a great many troubles, but most of them never happened." (Mark Twain)
 
 


Statgeek
Veteran Member


Date Joined Jul 2008
Total Posts : 1495
   Posted 8/7/2009 2:13 PM (GMT -7)   
Rich, did you do this all recently and are these deficits related to illnesses? How are you handling the news and what are your prospects?
It is nice to get answers, but sometimes the answers are scary.
Sue

crazyoldcatlady
Regular Member


Date Joined May 2009
Total Posts : 194
   Posted 8/7/2009 3:11 PM (GMT -7)   
Well, but the "fog" density varies from day to day - sometimes minute to minute! So whether I'm tested on a good day or a bad day could skew the results significantly. Or, as I become more fatigued as the test goes on, the fog would get thicker and the results of the latter parts of the test would be worse than the earlier parts. So while it does seem like a good idea, one would almost need to be tested several times under various circumstances to get a true picture of what is going on, IMHO.
Donna


crazyoldcatlady
Regular Member


Date Joined May 2009
Total Posts : 194
   Posted 8/7/2009 10:00 PM (GMT -7)   
Agmaar, you have inspired me. In my constant quest to plagiarize favorite songs, I shall rewrite the BeeGees "How Deep is Your Love" to become "How Thick is the Fog". Be watching for the new thread, coming soon!
Donna
 
I would be unstoppable...
                           if I could just get started.


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17094
   Posted 8/8/2009 8:07 AM (GMT -7)   
Rich, I know, for me, that I wouldn't direct my life according to some medical tests.  Doctors have been known to be wrong plus they aren't factoring in the human spirit!  Since the beginning of time, people have done things that they thought they could never do.  If you have the desire and the hope, you can overcome sooo many things.
 
Look at Sue (Statgeek)!  She has taken on several things, over the past several months, that she was really concerned about.  The most recent was her job interview.  Her fog was bad but she was under so much stress.  She did the interview and ended up with the job...fibro fog and all!  I'm so proud of her.  She didn't stop and is reaching her goals.  We have many members doing things like this but she was the first to come to my mind.
 
I know the following isn't about fog but it does show the human spirit in action.  That is the story of Helen Keller.  When I stop to think of her, she was truly astounding.  She was blinded and and lost her hearing at the age of two because of an illness.  So, she hadn't really learned speech or seen that much of the world.  People like that would end up institutionalized at that time but her parents didn't give up.  With the help of her teacher, she learned sign language and could "see".  She ended up graduating from Radcliffe, with honors, when she was 24, she had speaking engagements all over the world and wrote many books, to boot!  That is the human spirit in action!
 
So, I guess what I'm trying to say is don't give up on your dreams.  Fibromyalgia doesn't affect your IQ and I'm sure you have loads to offer this world!  I know you help a lot here.
 
Sherrine
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


libertykitty
Regular Member


Date Joined Oct 2008
Total Posts : 111
   Posted 8/9/2009 2:45 AM (GMT -7)   
I had neuropsych testing done about a year ago and maybe the guys I went to were hacks but I didn't find it to be helpful at all. Also, my insurance did not cover it. Pretty much all they told me was what I already knew: I had dysthymia, which is a type of depression; mild dysnomia, which means mixing up words or not being able to think of the right word; and trouble with working memory.

This was really more depressing than relieving to hear because they also told me that I had above-average intelligence and understanding, there was just something along the way that was mixing up the signals and they didn't know what or how to fix it. And also, they said that my problem areas were at normal levels, they just expected higher scores for someone of my intelligence, which was kind of insulting to hear although I know it wasn't meant that way. The only thing I truly bombed on was reflexes, when they timed how many times i could tap my finger in sixty seconds and a couple other things. But I have wrist problems so they ignored those results. They also dismissed indications that I was "overly impulsive" because my mom and I said I wasn't. I feel like they shouldn't just take my word for it, though.

It annoyed me that they didn't actually quantify anything when they presented their results to me, they used terms like "average," "below average," "above average," and "poor." I know they HAD numbers but they wouldn't tell me what they were and I never got a physical copy of the results, though they were sent to my doctor. I think the guys I went to were just not that good. They definitely made me physically uncomfortable as a young woman, because I felt like both times I went into the office they were checking me out. At least the testing was done by some female psychologist that works there.

And to comment on Sherrine's statement that Fibro doesn't affect your IQ: that's true, but it does change how much of it you can use. It's very frustrating to understand something really well and be unable to express yourself, especially when you get the tests and they tell you you're really smart you just sound or seem stupid. I realize this a pessimistic thing for me to say, but that whole optimism thing has eluded me for pretty much my whole life. I'm trying, I really am, and I appreciate that you remind us that our lives are not over.

I've gotten a CAT scan and multiple MRIs over the years to monitor a cyst in my brain, and more recently an EEG and VER, as well as an ambulatory EEG which brought me to hysterics but apparently showed nothing wrong aside from a strange "blip" pattern that they usually associate with epilepsy but only when the blips are much closer together. I don't have a lot of faith in neurologists anymore, especially because I had to go halfway across the country to find a doctor that would actually tell me what having an arachnoid cyst meant and how often it needs to be monitored.

On the other hand, since I go to a neurologist I found out that my fog didn't magically get worse and then better, I actually had post-concussive syndrome for about a year. Which is nice because now I know not to expect it to happen again unless I whack my head on another tree and insist upon not needing to go to the hospital since it's not bleeding. For the record, don't ever take head injuries lightly like I did. That was a really stupid decision.

-Sandi
Diagnosed with fibromyalgia February 2008, dysthymia January 2009.
Vitamin D supplements, and Provigil and Temazepam when I need them.
Anti-depressants have been a bust but the rheumy wants to put me on Savella.

Post Edited (libertykitty) : 8/9/2009 4:00:43 AM (GMT-6)


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17094
   Posted 8/9/2009 10:55 AM (GMT -7)   

Sandi, you have been through a lot.  It is frustrating knowing that you know things but you just can't pull them out.  I get frustrated, too, but most of the time I just accept the fact that it's fibro.  I might as well, since there isn't anything I can do about it.

I had excellent grades throughout school and college and taught school before I started raising a family.  I know I am not dumb but, when I had to check my checkbook to give someone my phone number, it does make you wonder!  shocked   

My fog is worse when I'm in more pain.  I'll have good times and bad times with the cognitive memory issues.  Sometimes it amazes me what I remember and other times I can't remember a word.  I know the word, it's on the tip of my tongue, but I can't pull it out and I used to feel so stupid.  My friends would look at me like I was getting senile (I'm 62) and I even had a friend suggest to me to start doing brain exercises.  That's embarrassing.  But, I explained that this is caused by a cognitive memory problem associated with fibromyalgia and that shut them up.  They don't question me now.  That worked wonders!   wink  

I do have a positive outlook on life.  I do hope for the best...even though my life operates under Murphy's Law.  I just keep moving forward and keep hoping for the best and it does help the pain and I rarely have any depression because of it.  As I said before, since I can't control what is going on, it's just best for me and my pain to let it go and move forward.

Sherrine   


Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7

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