Neuropsych testing is it worth getting?

[chickpea]

Hi,
I’ve had ME for 15 years, with obvious cognitive dysfunction. I am curious about neuropsych testing from the perspective of seeing if it would help me improve functioning if I could target the areas of my brain that weren’t working properly. I do not require the testing for disability etc.
My concern is I’ve had so much testing over the years that ended up being useless, and I’ve crashed from having the testing done. Is it worth doing this test? It’s 6 hours and intensive. I would appreciate feedback on those who have had it, if it helped them or not.
Thanks fellow warriors!

 

[Shoshana]

I have no idea, @chickpea
but it is a VERY good question!

Thinking of you.

 

[junkcrap50]

I've had it done before I knew I had ME/CFS. I would not recommend it. There's not really much that can be done to treat the results.

I saw one and got the testing done after my HBOT doctor said he sends his patients involved with his studies to one. It was an all day of IQ tests and memory tests. I was totally whiped and had a bad "brain-ache," which I use to describe having mental PEM. It's not a headache, but rather feels like what your brain feels after finals exams in HS or college after weeks of long study days and long exams.

It didn't really provide me with any new information that I didn't already know from my SPECT scan and HBOT consult. The neuropsych testing showed that I had exceptionally high IQ and top percentiles in most testing except for areas of the brain that showed poor perfusion on the SPECT scan in the prefrontal cortex and lymbic system. The neuropsych testing also confirmed my exhibited cognitive symptoms: poor memory, poor word finding, poor decision making, very fluency, slow reaction, poor attention. In those areas where I had poor perfusion and had physical symptomse, I still tested "normal" on the neuropsych exam basically 70%ile. But these numbers were significantly lower than my IQ and other test areas of the brain where I scored >95%ile, so it was obvious I had problems there. It was actually a key insight by the neuropsychologist.

There wasn't anything the neuropsychologist could offer in terms of treatment. She basically said do crosswords and sudoku when I presented her information about brain plasticity and neuro-reprogramming. HBOT was the main course of treatment. She said that she could do another round of neuropsych testing after my HBOT treatment, but that it wouldn't be very useful as individuals with my intelligence level are too smart for the exam after doing it once.

I will say however, my HBOT treatment did help me with some of my cognifitive problems. It didn't cure all of them, but improved. I no longer have such extended pauses in my speech, searching for words. My memory is improved but not cured. My "brain-ache" or mental PEM is constant 24/7 anymore. My decision making is better (no longer changing outfits 3 times for the day like I used to).

In short, my neuro-psych testing confirmed my SPECT scans, which basically similar to SPECT scans on other CFS patients. My cognitive symptoms seemed to line up exactly with the neuro-psych testing and SPECT scans. So, no. I would not recommend it. It's helpful if you're at the beginning of the journey, trying to figure what's wrong and show that something's wrong. But many tests done after having proven one has CFS is kind of useless in my opinion, because there's nothing that can be done with the test results a lot of the time. It's adds more documentation and confirmation of symptoms.

 

[chickpea]

Thanks so much junkcrap50 that is so helpful! I too had the same issues shown on my SPECT. How were you able to get HBOT treatment? We have a facility here but apparently they only use it for wound recovery so I’m not eligible apparently.

 

[humanrising]

so glad you started this thread, I have also been considering this testing but really dreaded the idea. I would love to know if you don't mind sharing what doctor GP or neurologist etc that was willing to do a SPECT. I have been trying to get my GP and my specialist to do a SPECT or QUEEG test and they won't even discuss it with me. thank you for sharing!

 

[Diwi9]

@chickpea - I used to administer neuropsych testing. It is arduous to do a full battery, even for the administrator. I would not recommend doing so unless you can get special accommodations (i.e. limit the time of testing and spread out over a few days...make sure the environment is suitable...lighting and sitting upright can be serious obstacles). If one is having this testing performed for disability, then going full throttle would be the best way to show impairment but may come at a significant cost...any worthy administrator should note the condition of the subject in their final report (i.e. that concentration became increasingly impaired...and any self-reports the subject may have provided to the administrator about discomfort/difficulties).

 

[junkcrap50]

Thanks so much junkcrap50 that is so helpful! I too had the same issues shown on my SPECT. How were you able to get HBOT treatment? We have a facility here but apparently they only use it for wound recovery so I’m not eligible apparently.

I went and saw Dr. Paul Harch in New Orleans, who pioneered HBOT for brain injuries and chronic diseases, on a self referral. It's hard to get HBOT unless you go to an alternative/integrative medicine doctor who uses it in their practice or HBOT clinics that use it for head injuries, autism, lyme, or other diseases. I'm sure some HBOT websites might have a HBOT provider map that lists clinics.

Many doctors use the soft shell mild HBOT (mHBOT) chambers in their practice, but it's not the same as the hardshell HBOT chambers. Unless they use supplemental oxygen in their soft shell HBOT chamber and use a high quality nonrebreather oxygen mask as well, I wouldn't pay for mHBOT. Not nearly as much oxygen is delivered to your cells that way.