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My Diagnosis 3 - Psychoneurological Exam

Diagnosis Roller Coaster -Psychoneurologist Evaluation
(Yeah! Yeah! I know it is really Neuropsychologist.)

After getting the results of the MRI my neurologist wanted me to see a neuropsychologist for evaluation to assist in determining a diagnosis. My health insurance refuses to pay for a PET scan, so that is not going to happen at this time. Supposedly the PET would be definitive, but the neuropsychologist may also be able to tell because they specifically test the function of different areas of the brain.

Man did we all go into the wrong field of work. I got an appointment to see the psychoneurologist for the end of July, and it was now only the beginning of March. Nothing like job security. To think that I actually got my undergraduate degree in Psychology. What a waste. Oh well! It sure doesn’t matter now. I asked to be notified if there was any cancellation because of my work situation.

The psychoneurologist’s office called, and said they had a cancellation, and I could go early. My new appointment was for the first week of April. That is a full 3 months earlier. Now maybe I could finally get some answers as to exactly what I had wrong.

I received a letter from the psychoneurologist with some instructions, and directions on how to get there. They suggested I have someone who has known me for a while to come along to give some background material. My ex-girlfriend took a week of vacation, and drove from 3 states away to help me. Though she did give background information, it was good to have the moral support. I was very glad not to have gone alone.

I took along my original list of symptoms, as well as my year-end performance evaluation from work. I had not looked at it until the night before, and it was a good evaluation by an objective third party. (I will talk about my work evaluations in another post because they were very important in my diagnosis.) I gave them permission to access the results of my MRI also.

The psychoneurologist ordered a full battery of tests because of my age. I guess if I were older I would only have had about a half days worth of testing for dementia. Instead I got to spend a full day being mentally tortured.

I must digress for a moment. In the weeks before this evaluation I considered sandbagging on the tests to insure that I would qualify for disability. I knew I could not do my job, and was worried about my financial future. (I still am!) You must understand that I do not feel disabled, or unable to work. I sound better than I am because my verbal skills are still pretty good, so others rarely see me as disabled. Of course being unaware of the degree FTD effects you is part of the syndrome. In any case, I decided there was no benefit for me to attempt to fudge any of these tests. What I really needed was to find out what was wrong, and get a correct diagnosis. So I went in with the attitude of doing my best, and blowing these tests out of the water as I had always done with tests in the past. I felt good the morning of the tests. I did not feel at all confused or impaired in any way. It was what I considered a good day.

So, The tests themselves were very straightforward. They tested all aspects of my memory, and cognition, as well as motor skills. There was an interview to get background information, and discuss any symptoms or behavior issues. There were lots of word lists to recall, and groups of things to name, and pegs to put in holes, and pictures to match or draw. I thought I did wonderfully well on most of them. I thought I did horribly on the math. This test consisted of listening to the technician reading simple story problems. I was unable to remember the numbers from the beginning of the problem by the time I heard the end of the problem, and had to have most of them repeated. It was difficult, and frustrating because I knew it should have been very easy. The longest test consisted of more than 400 multiple-choice questions.

I thought I did horribly on the word list recall, but was average. The problem with that is that in the past I had much better than average recall.

The very last test was my undoing. It was to last for 15 minutes, and was super simple. I sat in front of a computer screen, and every time a letter appeared I had to push the space bar. If the letter was an “X” I was not supposed to push the space bar. The speed and size of the letters popping up varied. Simple. I could not do it! I got so frustrated on this test that I had to watch my language. I missed a few letters because I was watching something out the window for a few seconds, but the worst part was that I could not stop my hand from pushing the frakkin space bar when an “X” came up. I would see it, know I was not supposed to push the bar, and WHAM! - I still pushed the stupid bar.

Another test that I thought I did great on, but it turned out I did not do well at all, was connecting the dots. I did OK when it was just connecting the dots in numerical order, but when it was both numbers and letters I did not do very well. At the time I thought I did just fine.

Overall the tests ran the gamut from easy to challenging. Some were fun, some were boring, and some were difficult. On many of them I realized that I was being challenged by stuff that was super easy for me in the past. That part was a little uncomfortable.

At the end of the day I was glad it was over. I was very tired, and had a headache.


Diagnosis Roller Coaster -PET and Psychoneurologist Report


I got a call, and had a PET Scan scheduled a few days after my Psychoneurological evaluation. I went for the test, but they wanted me to sign a form saying I would pay for it if insurance did not. This is pretty standard, except that there was a note on the form saying that both they and my Neurologist had contacted the insurance company, and insurance did not confirm that they would pay, and had not returned a phone call. Several phone calls to the insurance company later, and it was confirmed that they would not pay, so I refused to get the test because there is no way I can afford it on my own. Disappointed, I went back home.

It was about a week later that the report from the Psychoneurologist was due. My appointment was for right after lunch. A dear friend went with me as I expected a lot of information in a short time, and figured an extra set of unimpaired ears might help. She had been with me to my family doctor, and was a super good note-taker. I am glad I did not go alone.

First, they went over all of the tests results, and what they were testing in great detail. On most of the tests I performed within normal limits, basically average. My IQ had changed. They have a test which estimates what your IQ was before you were impaired. It is based on vocabulary, and it actually estimated me about 10 points lower than I had ever tested. I think this is probably an artifact of the effect FTD has on verbal functions, and that is a big part of this test. So, the first thing was that my IQ had dropped nearly 30 points! I was now slightly above average overall, and in the past had always been in the top 2%. Working memory and processing speed were also impaired. The bottom line was that my Dementia Rating Scale score indicated I was in the “Low Average” range for intellectual functioning. Well, no wonder stuff that had always seemed easy to me was now more challenging.

That stupid test with the spacebar and the X’s determined that I was “Profoundly Impaired” in the area of sustained visual attention. I probably should not have been looking out the window. This resulted in my overall Dementia Scale Rating for Attention being in the “Mildly Impaired” range. I also showed some marginal impairment in several areas of memory which resulted in a Dementia Rating Scale value of “Low Average.” My processing speed for higher cognitive functioning was also in the “Borderline” impaired category.

My speech and language skills were in the average, high average, or superior range. This is why I sound better than I actually am, and others do not notice any impairment on casual meeting. Everything else was in the average range. Overall I had been evaluated on about 41 different criteria. That is a lot of information.

So, at this point all I heard was that my IQ had taken a hit, I had attention problems, and I was overall in the average range. That meant that I really didn’t have anything really wrong, and I would be back at work next week. I was feeling pretty good.

That lasted about 25 seconds.

The next part of the report was the interpretation, diagnosis, and recommendations. The very first paragraph was quite a shock. In short it said I had Behavioral Variant Frontotemporal Dementia, and should file for disability immediately. WTF!!!!!

As I remember it, the first thing I did was question this diagnosis. The doctors were both surprised I had even heard about FTD. (There were 2 PhD Neuropsychologists, not medical doctors,  there for my report) I have an undergraduate degree in Psychology, and had recently refreshed my memory on the subject by doing a lot of research on the internet regarding dementia. I had seen some descriptions of Picks Disease.

I explained that though my behavior had changed, I did not have the bizarre behavior I had seen described for Picks. I had some memory issues, and really thought I had early onset Alzheimer’s. I was not stripping naked, painting myself yellow, throwing ketchup on my head, and running down the street yelling, “I’m a french fry!”

They patiently explained that my memory issues were likely due to concentration, and that though I was not exhibiting bizarre behavior the changes I did have were consistent with FTD. They also explained that FTD would account for the specific changes to my executive and cognitive functions. I was about half convinced.

They went on, but most of that is a blur. Luckily I had a wonderful friend beside me taking notes on everything they said, and even asking pertinent questions. About all I remember from the rest of that appointment is that they said I was depressed, had ADHD-like symptoms, might benefit from some drugs, and they suggested I be evaluated to see if I was still capable of driving. Driving!?

I treated my friend out to a nice quiet lunch afterward. I drove!

The full report is about 18 pages long, and very specific.

Next - My Diagnosis 4 - Final-Diagnosis and Summary


2 comments:

  1. Thanks for the informative blog. It's helping me learn about my own damaged executive function (I'm collecting disability), but I have to say that every time I see "psychoneurologist" or its variants, it TOTALLY messes with my head and drives me crazy!

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  2. Thank you so much for this. I have someone close to me that I suspect has this problem. Only got two wrong on the memory test - but symptoms are quite concerning - and everyone is just marking it up to stress. I have been told that I am not to keep account of everything he does - because he forgets so much of what he does and makes so many excuses for what is happening. I have needed to read a blog or something, ANYTHING to help ME through this process of potentially becoming a carer. I am hoping and praying it is not bvFTD but when I can tick almost every box of symptoms and I Have known this person for so long I can't help but have that sinking feeling. Anyway - I'm hoping for the best but knowing there are blogs out there about this from a first person so I can understand what is going on from a different perspective has given me a lot more compassion and patience. Thanks again.

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