Multiple Sclerosis and My Neuropsychological Testing

Problems with left frontal system functions are often recognized upon neuropsychological testing.
Problems with left frontal system functions are often recognized upon neuropsychological testing.

If you have MS, chances are you've noticed a change in your short term memory. When it gets annoying enough, we often begin searching the Internet for information about MS and memory loss.

That inevitably puts us on the road to understanding cognitive dysfunction and neuropsychology.

This was my road and my path. It lead me to seek out the expert opinion of an area neuropsychologist, who gave me my very first neuropsychological assessment in relation to MS.

Questioning Our Lack of Memory

Have you ever asked yourself the following questions, or made the following comments?

  • What's happening to my memory?
  • I don't know why my memory is bad these days?
  • I'm sorry, what is your name again?
  • I was going to say something . . . I forget now.
  • I can't remember what I was supposed to pick up at the store.
  • I came up here to get something, what was it?
  • I can't believe I forgot to pay this bill!

If the above sounds all to familiar to you, then you are one of the 45-65 percent of people with MS who suffer from MS-related cognitive dysfunctions.

If you to are looking for assistance with your deficits, you can consult a neuropsychologist, or a speech/language pathologist, or an occupational therapist.

This is a MRI image of the brain
This is a MRI image of the brain

Related Medical Terms and Definitions

Before I describe my specific examination, it is probably helpful to define some basic medical terms involved in the assessment process, which are relevant to MS.

Neuropsychology: The branch of psychology that deals with the relationship between the nervous system and the brain especially dealing with mental functions such as language, memory and perception.

Neuropsychologist: A psychologist with training that emphasizes brain anatomy, brain function, brain injury, or disease. Administers tests to detect effects of brain dysfunction. They can also track changes in the brain over time.

MRI: Magnetic Resonance Imaging uses strong magnets and pulses of radio waves for imaging the brain and the spine.

Cognitive Functioning: The range of high level brain functioning including the ability to learn, remember, organize, plan, and problem solve.

Brain Atrophy: Atrophy due to demyelination and destruction of nerve cells. (Please see this description of my brain atrophy.)

Neuropsychological Assessment: Testing brain function to evaluate problem solving, attention, memory, language, cognitive, and motor skills. Involves pen and pencil tests and may even include computerized-administered tests.

The First Test I Failed

My Own Neuropsychological Assessment

It was a long day, indeed. If you ever make an appointment, plan for 6-7 hours. If you finish before that time period, you'll be pleasantly surprised, but if you don't, then you won't be shocked.

You might even need to schedule your appointment over a couple of days.

I was administered the tests 10 yeas ago in '99. Back then I had just completed my first round of steroids, so there was no significant energy lag. Now, however, I would have to schedule the test over a period of days.

My fatigue won't even allow me to think about doing a battery of tests all in one sitting.

Failed My Very First Test

After an initial interview and family history, the doctor gave me the same type of test shown on the accompanying video. I just couldn't believe I couldn't perform what I thought was a simple test.

My doctor looked at me and smiled and we joked about my not be able to cheat by looking at my hands. He then explained to his trained technician, some medical mumble-jumble about why I wasn't able to do what I was asked to do.

If I thought I had tasted the bitter taste of defeat, I would soon discover how wrong I was for what I was about to fail would be far more humiliating to my psyche

Failed Some More Tests

Although you aren't told the results until your follow-up visit, you don't need a doctor to tell you when you utterly fail to pass a drawing test. Sure there's a much more medical sounding term for it, but in my mind it will always be the test that showed I couldn't draw what I was looking at.

During the follow-up visit, the doctor showed me what I was asked to draw and then showed me what I actually produced. I looked at the original, then looked at MY drawing and blurted out, "why didn't I just . . . . "

The doctor was nodding his head in agreement as if to say "I know, I was wondering that as well."

His report said it all though, he wrote of the copying task, "she produces a grossly distorted reproduction despite utilization of multiple trial and error attempts."

He wasn't so clinical with me, though. He kindly stated that maybe I became so focused on the details of the assignment that I didn't see the big picture.

You know and I know that was just a nice way of saying, "You can't see the forest for the trees!"

Results

I received written confirmation that my memory was as bad as I thought it was, which in a strange way was a little bit of a relief.

So many times you start feeling guilty about what seems like silly mistakes or deficiencies. When I found out there was an actual lesion or lesions responsible for my difficulties, lesions I could do nothing about, it made me feel a little less angry and frustrated. I realized I would now have to learn how to accept my limitations and figure out what if anything I could do to lessen the impact of the cognitive difficulties.

It was mentioned that old information was well-retained, but as for new information, forget about it. My husband and I are dumbfounded sometimes by my ability to recall days, events, and times prior to my '93 diagnosis, but when it comes to remembering something or someone I met a month or even a day ago, I'm unable.

We have a memory routine now of making sure I respond audibly when he tells me something important.

Seems I have a better chance of remembering something if I'm concentrating enough to respond to one specific item. If either one of us forgets and we talk about a couple of things at a time, it doesn't even register.

Often when I've stated categorically that he did not tell me something and he states that he did tell me,  I'll ask, "then what did I say when you told me?" He'll say, "you didn't say anything." Then I have to remind him that if I don't respond, it means it hasn't registered.

It's like I'm a child, "OK, what did I just say?" You said, "so-and-so is in the hospital" I can see now why parents got irritated that they had to repeat the same thing over and over again.

Helpful Aids

It was suggested that I keep making lists, get an organizer, and do whatever it takes to help me remember.

I went the medical route and gave Aricept a go. It is prescribed off-label for MS because it was initially tested and approved by the FDA for Alzheimer's, not MS. It did help me to concentrate to a greater degree, which made me very happy. I only took it for maybe a year or so, as I could tell I didn't need it any more.

Since then the lesions affecting my concentration have either gone away or become inactive. I still have much difficulty with other aspects of my cognitive functioning, but it is something I have grown used to now.

Future Testing

Since it has been 10 years, I do think it would be a good idea to have another assessment done.

I know I am having more problems remembering faces of people I have just met. Never had that before. I can't tell you how bad I feel when I meet someone and have NO memory of them until they tell me their names. Facial recognition is something I had always been good at, now that is no longer the case.

Maybe there is something I can do which can help me in this specific area. Getting another assessment might provide the latest aids in this regard.

One thing is for sure, when I'm ready to get another assessment, I'll be taking much more then one day!

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Comments 26 comments

acborgmeyer profile image

acborgmeyer 2 years ago from Oregon

My neurologist wants me to do this, and it will all be out of pocket. So she referred me to a University. Still $350. But, here's my dilemma: I'm an artist, and I'm ambidextrous. I can draw anything and point to anything anywhere, as long as it's a "good" day. At this point my neurologist wants to use the neuropsych review as a diagnostic tool, because I do have cognitive issues and a clean MRI two years ago. But what about all the physical stuff like not knowing which day I'll be able to walk or use my arms. Are these things part of the neuropsychological test results? And, do the results of a neuropsych test offer better information than a spinal tap? If I'm going to have to spend $350 that I don't have and can't borrow I want to make sure a definitive diagnosis can be made, and that I can get actual real help.


Mark5kaori 3 years ago

I understand you completely. I went through my test back in 1992, and feel like I failed. My test was miserable, I could not remember the story I was told one hour ago nor could I complete the puzzles I was given to complete. (BTW, I never liked doing puzzles anyway.) I think it is time for another test. When I complained to my doc about my memory he just said it was age. I know what I was prior to MS and what I am now. Before MS I graduated at the top of every class I took in the Air Force now I struggle with even simple classes.


Jen's Solitude profile image

Jen's Solitude 4 years ago from Delaware Author

how-to-make,

My answer was for you. It starts with "Hi!"

Sorry I should have better indicated that it was intended for you.


how-to-make profile image

how-to-make 4 years ago from India

Hey solitude. Sorry to disturb you in between but You didn't answered my question which asked in my previous question.


Jen's Solitude profile image

Jen's Solitude 4 years ago from Delaware Author

Hi! Forgetfulness is a very normal thing especially as we get older. Forgetting where we put our keys is most common. If you think your memory problems are beyond the normal range you can bring it up with your healthcare provider, he or she will be qualified to give you an opinion. I will be writing about this subject again in the future, by the way. Thanks for your comment!


how-to-make profile image

how-to-make 4 years ago from India

hey solitude. Most of the times it happens with me. I keep forgetting about the things I have recently done. Even I lost my keys many a times. Should I go for Neuropsychological Testing?


Jen's Solitude profile image

Jen's Solitude 5 years ago from Delaware Author

A belated thank you for your comment! I've been very busy so am late in acknowledging recent comments, still I appreciate your reply!


AuniceReed profile image

AuniceReed 5 years ago from Southern California

Great hub Jen. It speaks volumes to your courage and dedication to helping others. I have a nursing background and I'm actually taking the looong educational journey towards becoming a neuropsychologist. Voted up:)


Jen's Solitude profile image

Jen's Solitude 6 years ago from Delaware Author

Great news on all fronts MS Carol! Tysabri seems to be doing its job, it is always great when no changes are observed. I loved those type of results.

Glad your testing went well too. Please let me know what she suggests for you and congrats once again.


MS Carol 6 years ago

The testing went well I think, time flew by. She'll send me results, recommendations, referrals and follow-ups shortly. She was very nice and easy to talk to. Better yet, I stopped by the records dept. and got my MRI results from the 1st in 2 1/2 years of being on Tysabri. NO new lessions, no changes at all! That's the first time ever in over 30 years! I'm not getting better but I'm not getting worse. YEAH!!!


Jen's Solitude profile image

Jen's Solitude 6 years ago from Delaware Author

Hi MS Carol, I am sure the test will reveal areas that you can work on to make some improvements with your cognitive functioning. I hope you remember to mention the anger problem as it can also be symptomatic of cognitive issues. I experienced unusual bouts of rage and was truly glad when it subsided. Let me know how the testing went for you.


MS Carol 6 years ago

I ment to say I've had MS for years and years.


MS Carol 6 years ago

Hi Jen, I'm 61 and have had MS for year, I'm not good with numbers, dates, time, or word finding. Lately or maybe for sometime I've been verbably abusive to my husband of 42 years. If I were him I'd leave. Which leads me to the neuro-psych test I'm having tomorrow. I'm really nervous, don't know if I can make it for the 3 hrs she said it would take. But I know I need help. Thanks for giving me an idea of what to expect. Carol


Jen's Solitude profile image

Jen's Solitude 6 years ago from Delaware Author

Hi Cassidella! Thank you so much for the kind words. I guess when you have MS long enough you learn about a lot of different aspects of the disease out of necessity.

I share your hope, thanks for taking the time to leave me a comment.


Cassidella 6 years ago

Hi Jen. You are remarkable! With over 20 years in the healthcare field, I can see that the amount of time and energy you have spent researching MS is great. This is obvious because of your informative hubs. I hope others are educated and encouraged by what you have written.


Jen's Solitude profile image

Jen's Solitude 6 years ago from Delaware Author

I hesitate to think what happens when old age combines with my already existing memory problems. LOL Thanks for the comment, lovelypaper


lovelypaper profile image

lovelypaper 6 years ago from Virginia

I can relate to the short term memory loss. It's so frustrating! I have brain farts all the time.


Jen's Solitude profile image

Jen's Solitude 7 years ago from Delaware Author

I totally agree with you. I was so glad to have explanations for deficits I experienced. Sometimes you wonder if something isn't all in your head, then you get the test results that prove it isn't. It can be scary though, since you have to wait for the results, but I would rather know for sure then wonder around in a fear-fed maze.

And I did enjoy learning my brain was in pretty good shape! ;-)

Enjoyed your comment, thanks for the input!


rmcrayne profile image

rmcrayne 7 years ago from San Antonio Texas

Jen I hope those with and without MS will take your example and "embrace" neuropsych testing! Look at it as an opportunity. Tell the neuropsychologist that after the test you want "real life" examples and impact of your strengths and deficits.

A young and arrogant internal medicine doc once tried to write me off as having "multiple psychiatric issues" rather than recognize the impact of my thyroid disease. He must have slept through his "listening to patients" and "how to make medicine more than just an academic activity" lectures. He ordered MRI and neuropsych testing. I did not want to have the MRI, and ultimately chose not to. But I embraced the opportunity to dismiss the “psychological issues” argument to my care. The psychologist said in my case that what the doc was looking for was better demonstrated by the test battery than imaging, and I believe him.

Neuropsych testing can be a wonderful experience to prove you have a pretty darn good brain, or help you learn how to accentuate the positive.


Jen's Solitude profile image

Jen's Solitude 7 years ago from Delaware Author

Hi Milenia Chung,

I only wish I was that creative!(smile) I suppose if I felt lonely the name would apply more, but actually solitude reminds of feeling at peace and Jen is a shortened form of my middle name, Jenny. So since writing has always given me a peaceful feeling inside, I picked Jen's Solitude. Not very creative is it?

Your username seems far more interesting. Does it have something to do with a thousand years?


Milenia Chung 7 years ago

Dear Jen,

MS can be a very lonely experience since few people understand how debilitating the invisible symptoms can be. Is this why you named your presence online as Jen's Solitude?


Jen's Solitude profile image

Jen's Solitude 7 years ago from Delaware Author

JamaGenee and Connie, Thank you both for your comments.

Jama, most people aren't aware that MS affects memory unless they live with someone who has MS, or are good friends with a person with MS. I'm glad this article was written in a way that could explain it to you. :)

Connie I do believe you could make ANYONE feel good about themselves. It sure is a great quality to possess. Thanks so much for using your gift in my behalf!


Connie Smith profile image

Connie Smith 7 years ago from Tampa Bay, Florida

You know, Jen, more than most, since you have MS that no one would voluntarily take it on just to educate others about the disease. Not only are you so very courageous to put your illness out in the public, you have used your illness to give your life a greater purpose. Your strength of character comes shining through and I truly am in awe of that.


JamaGenee profile image

JamaGenee 7 years ago from Central Oklahoma

I had heard that MS affects memory as well as muscle function, but wasn't sure how. Thanks for an informative hub!


Jen's Solitude profile image

Jen's Solitude 7 years ago from Delaware Author

Wow Connie, thank you so much for your very kind and encouraging comment. I truly appreciate it. Yes we all have something to learn to live with. I sure am glad you are feeling better these days and I hope it continues. I'm 49 myself and I'm OK with having memory problems due to age, but when this all started I was in my 30's and had never experienced any of it before. It was most frustrating, as you can imagine. I felt I was too young to be bothered by what felt like symptoms of advancing age. Now after all these years, I don't worry about my age, just my health. HaHa Thanks again!


Connie Smith profile image

Connie Smith 7 years ago from Tampa Bay, Florida

Jen, I don't have MS, but, as I get older, I can relate to some of the memory questions. Back in 2001, I had cancer of the tonsil and radiation therapy. Right after all that was over, the memory didn't seem as sharp as it was before. I believe that so much of it was due to the worry of my illness and whether it was going to come back. No matter that you try to keep that in the back of your thoughts, it is the white elephant in the brain. Now that I am going into my fifties soon, I notice that I can't remember how some words are spelled like I used to (always a good speller) and definitely am losing my train of thought more. I work on brain exercise type puzzles as some people in my family have ended up with dementia. We all have our burdens in life. I am so sorry that MS is yours. I am learning so much about MS from your hubs and you are really making a difference here, not only for people who might have MS, but for those who know someone who has it. If we, in life, can gain understanding of others, it makes us all better for it. Keep up the good work as a spokesperson for all those who suffer from MS.

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