Multiple Sclerosis and My 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 Net 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.

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

Before I describe my specific appointment, 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.

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 their was no significant energy lag. Now, however, I would have to schedule the test over a period of days, the 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 use 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!