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Anyone else have to get a neuropsych eval? Need help and advice pls!
Hello all. I’m quite new here. Long story short, I have strongly “probable ALS” (bulbar and respiratory onset) and I have a 2-day (all day, both days) appointment next Tues/Weds at a well-respected multidisciplinary clinic here in my city. I feel lucky to have this resource.
I am getting lots of auto text messages (they told me I would) with specific appointment types and times that will be part of my full evaluation. I was puzzled to see that one of my appts is for a “neuropsychological evaluation.” From what I’ve learned, this is seriously mentally and emotionally draining (it’s hours long) and I’m having a hard enough time staying alert already, to put it mildly.
Is this type of testing standard in getting a diagnosis, did anyone else here have to do this?
I went ahead and started to go through the Docu-Forms but then reading through it, my jaw hit the floor – it’s a whopping nearly $400 dollars an hour! And the eval is estimated at 4-6 hours, and that’s not even counting the hours for the neuropsychologist to review everything and write the report! And that payment is due at time of service, or deposit, and then insurance would be billed. It’s a gut punch! (yes, I do know the other testing will be very costly too).
On top of that I can’t help but wonder why a neuropsych eval would be even necessary in going from “probable ALS” to “definite.” It’s rubbing me the wrong way for some reason – what I mean is, having to go through hours of this type of grueling evaluation right now seems too much for me to handle – and it’s scheduled in the afternoon which is the timeframe I start to really, really decline and can hardly keep my head up. I’m really shaken by this. 🙁
I decided to hold back on signing that agreement, and emailed the department asking for specifics on the co-insurance and what the minimum deposit would be, and that I’d send the forms after I received that information.
From what I understand there will be a TON of testing over this 2 day period (7am to 5pm both days), and I also understand it will be very costly, even though I have good insurance and have met my deductible, I fear it’s going to hit us hard in the wallet.
But I digress, my questions are:
Did anyone here with an official diagnosis have to have a neuropsychological evaluation as part of getting your diagnosis? I understand this clinic is one of the best in the nation, but it’s making me nervous (money wise and vulnerability wise) that in the middle of all the physical and imaging testing there’s a grueling, mentally draining neuropsych evaluation.
And I’m embarrassed to ask this, but, would it be improper for me to decline this part, or at the least, try to get it scheduled for a later date, after all the actual physical examinations are done (like maybe at a morning slot while I still have a shot at being more of myself?). Or would that seem “non compliant” and make me a “problem patient,” because I really don’t want to be like that. 🙁
If anyone can share their experience or just thoughts/opinions and give me some advice about this I’d be so very grateful, thank you!
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