Looking for info on brain scans help prove symptoms for disability

[purrsian]

I've applied for disability recently and am looking for any other tests that can better indicate the physical nature of my illness. I've been reading recently about cerebral hypoperfusion and I do feel like I would have that, due to my cognitive dysfunction, general foggy feeling in my head and POTS. I'm really not sure what to ask my doctor for though.

Is there any specific tests that need to be done, or specific areas to test? Would a SPECT scan be best, or is there something else more appropriate? Thanks for any info, I've been trying hard to research it myself but my brain is just not taking things in well at the moment

 

[TrixieStix]

@purrsian are you in the US? If so the Social Security Administration has specific requirement in regards to an ME/CFS diagnosis must be documented for disability purporses. I'm on SSDI myself, but was forced onto it due to another health issues previous to developing ME/CFS. However I am in the process of having my ME/CFS doc go about documenting my ME/CFS diagnosis so that it too will also hopefully hold weight with the SSA. Here is a link to them....

https://www.ssa.gov/OP_Home/rulings/di/01/SSR2014-01-di-01.html

 

[MEPatient345]

@purrsian I recently had a qEEG done for my LTD case. I don't think it's one that's required by the SSA but I think all tests are helpful in building a picture of our impairments for the judge. The good thing about qEEG is that it takes about ten minutes to do the test, and it's very non invasive and not tiring. The test and report cost me €800.

It showed abnormalities in alpha, Beta and Theta activity in a range of brain areas that were two to three deviations from the norm. The neuroscientist said this was highly unusual, he wrote in his report that
" ..there is an extant literature associating elevated theta activity in frontal and pre-frontal brain areas with
difficulties in executive functioning, including processing speed, decision-making, attention, concentration and focus, and aspects of memory, as well as elements of emotional and mood regulation [e.g. 4]. Excess theta activity has also been linked to Chronic Fatigue Syndrome [1]."
He noted that elevated beta and alpha activity is associated with ADD symptoms and impaired functioning too. So, I found all this v useful as a physical test backup to cognitive testing which shows I have these symptoms. These were the referenced published papers he used in his report to back up his findings, which you could show to an eeg provider if you get one done.

1. Billiot, K. M., Budzynski, T. H., & Andrasik, F. (1997). EEG Patterns and
chronic fatigue syndrome. Journal of Neurotherapy, 2(2), 20-30.
2. Clarke, A. R., Barry, R. J., Dupuy, F. E., McCarthy, R., Selikowitz, M. &
Johnstone, S. J. (2013). Excess beta activity in the EEG of children with
attention deficit/hyperactivity disorder: A disorder of arousal? International
Journal of Psychophysiology, 89(3), 314-319.
3. Clarke, A. R., Barry, R. J., McCarthy, R., & Selikowitz, M. (2001). Excess
beta activity in children with attention deficit/hyperactivity disorder: an
atypical electrophysiological group. Psychiatry Research, 103(2-3), 205-218.
4. Hermens, D. F., Soei, E., Clarke, S. D., Kohn, M. R., Gordon, E. & Williams,
L. M. (2005). Resting EEG theta activity predicts cognitive performance in
attention-deficit hyperactivity disorder. Pediatric Neurology, 32, 248-256.
5. Koehler, S., Lauer, P., Schreppel, T., Jacob, C., Heine, M., Boreatti-Hümmer,
A., Fallgatter, A. J. & Herrmann, M. J. (2009). Increased EEG power density
in alpha and theta bands in adult ADHD patients. Journal of Neural
Transmission, 116, 97-104.
6. Thatcher, R. W., Walker, R. A., Biver, C. J., North, D. M., & Curtin, R.
(2003). Quantitative EEG normative databases: Validation and clinical
correlation. Journal of Neurotherapy, 7, 87-121.

 

[purrsian]

@purrsian are you in the US? If so the Social Security Administration has specific requirement in regards to an ME/CFS diagnosis must be documented for disability purporses. I'm on SSDI myself, but was forced onto it due to another health issues previous to developing ME/CFS. However I am in the process of having my ME/CFS doc go about documenting my ME/CFS diagnosis so that it too will also hopefully hold weight with the SSA. Here is a link to them....

https://www.ssa.gov/OP_Home/rulings/di/01/SSR2014-01-di-01.html

I'm in Australia, so probably different requirements although they do seem to what as much physical evidence as possible. Repeatedly says self-reported symptoms aren't good enough, which is unfortunately most of our symptoms as they are hard to measure! I've read over the link anyway, which was interesting to see the differences between our systems. It did mention MRI brain scans, as well as non-exudative pharyngitis which I often have which might be worth mentioning to my doctor and adding to my application for physical symptoms.

@purrsian I recently had a qEEG done for my LTD case. I don't think it's one that's required by the SSA but I think all tests are helpful in building a picture of our impairments for the judge. The good thing about qEEG is that it takes about ten minutes to do the test, and it's very non invasive and not tiring. The test and report cost me €800.

It showed abnormalities in alpha, Beta and Theta activity in a range of brain areas that were two to three deviations from the norm. The neuroscientist said this was highly unusual, he wrote in his report that
" ..there is an extant literature associating elevated theta activity in frontal and pre-frontal brain areas with
difficulties in executive functioning, including processing speed, decision-making, attention, concentration and focus, and aspects of memory, as well as elements of emotional and mood regulation [e.g. 4]. Excess theta activity has also been linked to Chronic Fatigue Syndrome [1]."
He noted that elevated beta and alpha activity is associated with ADD symptoms and impaired functioning too. So, I found all this v useful as a physical test backup to cognitive testing which shows I have these symptoms. These were the referenced published papers he used in his report to back up his findings, which you could show to an eeg provider if you get one done.

Thank you for this info, I'd never heard of a qEEG. I've always felt that cognitive testing wouldn't reflect the degree of functional decline I've experienced, as I used to have a super active mind and could focus on multiple complex concepts at once. My dad had the same issue with his heart valve issue - the doctors found his exercise test results normal, but he had to really insist that it's very abnormal for him as he was an exceptionally fit cyclist. I would hope that a test like this that looks deeper than just abilities would reflect such changes better (I hope that makes sense, I'm a little out of it and words are hard lol).

My processing speed, decision-making, ability to multi-task, the length I can concentrate and my emotional/mood regulation have all definitely been affected, so it would be interesting to see my results if I can get this test.

 

[MEPatient345]

@purrsian Just to clarify, a qEEG needs to be read in conjunction with a cognitive test report. It is less valuable alone, because some patients may have abnormal tests but have no symptoms. So, they must read the qEEG result and interpret them in the context of what your symptoms are -- which is documented by cognitive testing.

I have had cognitive testing done 3 times and it's always found my impairments, although once the psychologist used too easy a test for one reading, and it looked like I had improved in that area. So, it depends a lot on the skills and knowledge of the person doing the test. An experienced psychologist, or better yet one with knowledge of ME, will be able to document your impairments if they are there.

 

[purrsian]

Ok thanks @Silencio , great info

 

[wastwater]

I wondered about EEG on the nhs to show abnormalities

 

[MEPatient345]

A regular eeg for me did not show abnormalities, whereas a qEEG showed many. It’s just a different imaging software.