Neuro-psych assessment

[Kati]

It seems like I will be forced to get a neuro-psych assessment in order to move forward with my disability claim. :headache:

I wonder if any or all of you had to go through that and whether you have any tips for me. I have 2 world class physicians that have found me just as disabled as a progressive MS pt, congestive heart failure pt or late stage AIDS. I have a documented abnormal VO2max test and abnormal cognitive test. What do they want more?

 

[ukxmrv]

Kati, I had to do this as part of an insurance case. My experience was that any spin could be put on the results i.e. a ME friendly Psychologist / Psycho-neurologist would take one stance and a non-friendly one another.

Do you have to agree an expert first? My advice would be to pick someone that is fair if you have a choice.

The insurance company wanted to "prove" that I was faking the level of brain symptoms I was reporting. They wanted to block my claim by using an assessment and then a test. It supposedly can include a component to show that you are faking it. That is why I would only see a doctor experienced in ME and able to do this test. Mine was the Wais-R (sp?).

Hope you have better luck.

 

[floydguy]

Kati,

I agree with above. Do everything in your power to see someone who supports or at the very least has experience with ME. I went through a neuro-psych test for Lyme and it was awful. I'd also consider emphasizing the cognitive aspects of dysfunction. Don't get into the physical dysfunction - except where there is documented organic dysfunction. They will be looking for any hint that suggests that your issues are due to depression. Think of it as being cross-examined on the witness stand. Don't offer up anything that is not asked for. Chances are they will be as sweet as pie but don't let this fool you. This was my experience. Your mileage may vary.

Good luck,

Andrew

 

[Lynn]

Hi Kati,

I went through this as well. My strategy was to fly to California and have an independent neuropsych exam done by someone who is familiar with ME/CFS. It was expensive, but if you have the money, it was worth it because I did receive my benefits.

Lynn

 

[robinsonsb]

my neuropsych exam

Hi, Kati,

My short answer to your question about why they want more is so that they can not give you benefits. Although insurance companies and social security are ostensibly set up to grant disabled people benefits, my sense after being in the system is that they operate to conserve their funds, that is, NOT give them to you. You don't mention whether you're applying for Social Security disability or if this is a long-term employment-related disability. It may not matter, but in my case, I had a neuropsych exam that I hoped would show the extent of my memory and executive functioning problems. Instead it showed that I was "mildly" impaired in short-term memory -- this at a time when I was having to call my own stepdaughter "Honey" to try to hide the fact that I couldn't remember her name. (And I was only 56 y/o.) I did not try hard to answer any question on the exam and still was deemed pretty much just fine. (My best advice is to make sure you answer the questions as you would on your absolute worst day, because the standard tests minimize impairments caused by ME/CFS.) I agree with the other people who posted that if it is at all possible, find your own neuropsych examiner, one who is familiar with manifestations of CNS impairment and will test for them (or even better a SPECT or fMRI or PET scan). Also if you don't have benefit of an attorney in this process, you're at a severe disadvantage. I wish you the best with this grueling, demeaning and scary process. (Oh, and, it took me 3 and a half years, but finally I did get SSDI benefits.)

It seems like I will be forced to get a neuro-psych assessment in order to move forward with my disability claim. :headache:

I wonder if any or all of you had to go through that and whether you have any tips for me. I have 2 world class physicians that have found me just as disabled as a progressive MS pt, congestive heart failure pt or late stage AIDS. I have a documented abnormal VO2max test and abnormal cognitive test. What do they want more?

 

[Kati]

Thank you all for your answers. This regards private long term disability as I already have public pension plan disability.
I am represented by my union. I am extremely worried about the kind of tsting they willperform. I will speak with the union rep and my physician about this. I am on the waitlist for a well known psychiatrist who is sympathethic to our cause,and may contact her as well.

ME/FM action has a few publications about the topic that managed to scare me too. Being cautious and takng all steps to prevent BS from happening is wht. I want to do here.

http://www.mefmaction.com/index.php?option=com_content&view=article&id=262&Itemid=281

 

[drex13]

I know others who are on disability for one reason or another, and they all have had to go through a psych evaluation, regardless of what the reason for their disability was. I think that alot of physical disabilities end up becoming mental disabilities after these evaluations. It would seem that a person seeking legitimate disability has to play their game and get it any way they can. I understand they have to weed out people who aren't disabled and looking for a free ride, but sometimes common sense seems to get thrown right out the window with people who are clearly physically disabled.

 

[SickOfSickness]

Wow I don't have anything to add but I wanted to wish you the best. I am worried I will have to do one too.

 

[glenp]

Unless it has changed in the past few months, the neuro-psych testing here in Vancouver does not includes tests that show our deficiencies. I think that the most you would get is slowed processing speed and extremes in scores that suggest a learning disability. Irrelevant and inaccurate information can also be included on these test result summaries so it is imperative that you demand no additional information other then test results be recorded on the testing physicians summary. . What psychiatrist is aware of CFS/ME? I heard of one in Vancouver but have forgotten her name. Dr. Atul Nanda is excellent but is only taking patients that fit the criteria for dementia (not us) and or geriatric patients. I would get a letter from one of your CFS/ME "world class physicians" stating the necessary tests that show our deficiencies and state that our current ones do not show our deficiencies.

glen

 

[cherlyn]

Thanks for the link above. More helpful info... I have another one to add as we are the in process of locating a neuropsychologist for an evaluation for SSDI for my son and I just recently found this video, a helpful presentation in 2007 by Gudrun Lange, PhD, a neuropsychologist who has been heavily involved in research regarding CFS and its effect on cognition. The video is an hour, but about the last 20 minutes gives her recommendations for finding a clinician, the types of tests that should be done, etc. It is very helpful information. I recommend it to anyone in this process. Certainly everything I'm reading is that this evaluation done by the "right" clinician is a critical part of applying for disability. Now how to get through such an evaluation without complete exhaustion long before it's over...

 

[Kati]

Just wanted to update everyone- based on my neuro-psych assessment (or they say) my LTD claim has been reinstated until I get better or reach 65 years old. :victory: