Question about Neurocognitive/Neuropsychological Testing

[Persimmon]

Hi, can any of you offer guidance about having a neuropsychological assessment performed in the States?

I'm trying to research where to go and what's involved. It seems to make a big difference to go to someone experienced in testing for cognitive deficiencies in ME/CFS.

The leading candidates appear to be:
Dr Sheila Bastien (who was featured in Osler's Web)
Dr Gudrun Lange (who works at UMDNJ; and researches with Ben Natelson)
Whoever does the neuropsychological testing at Nancy Klimas's clinics

It'd be great to learn a bit more about these three, and whether it makes much difference which of them to see. Alternative suggestions would be welcome too. I expect they would all be expensive, but don't know just how expensive...

Thanks

 

[*GG*]

I have heard you want to be careful on the person performing the testing, which you seem to be aware of, you want them to be familiar with ME/CFS (is this the legitimate name now in the US?).

GG

PS Might want to check out this link, have not read it yet:

http://www.masscfids.org/resource-library/15/395

 

[vitamink]

i just had a neuropsychological evaluation with dr. leo shea in new york: http://n-e-t-s.org
cfs is one of his specialties, along with lyme disease and, i believe, traumatic brain injury. the evaluation was pretty expensive but my insurance agreed to cover about 80%...

 

[cjk's mom]

Isn't Dr. Lange married to Dr. Natelson? I know he told me his wife does neuropsych testing and it's very expensive. Sorry I can't offer more.

 

[roxie60]

I'm going to be scheuled fr one of these, looks like I better ask some questions of the tester to see what their expeirence is with CFS patients. Sometimes Drs get offended when you questions their qualifications to assess you but I'm getting tired of the lab rat life so I'm getting a bit more demading especially with the costs of time and money. Ive been told onlhy one Dr in town does this type of testing and it will take 3-4 hrs.

 

[roxie60]

Anyone else have a neuropsych test and if so did you feel it helped move you forward or was helpful or harmful?

 

[caledonia]

I assume this is for disability purposes? My test showed that I had deficits consistent with CFS, but the psychiatrist was not sure that they would preclude me from working. At that time, I had extremely severe concentration issues, couldn't read or comprehend anything more substantial than the headlines of newspaper articles, and got lost frequently while driving. He also concluded that I didn't have a primary mental illness, and I wasn't faking anything.

So I would say it wasn't the slam dunk you would have hoped for, but was consistent with my other medical evidence.

The functional capacity evaluation was much worse and a slam dunk - "not able to work at any job, even sedentary work."

The information my judge liked the best was a history of continuing disability over the two years that I was waiting for a hearing. I accomplished that by seeing my doc every three months, and documenting that I was still disabled. But of course, you have to establish that you're disabled first, to document a long history of disability.