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    • #19849
      Anonymous
      Inactive

      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!

    • #19852
      john s
      Participant

      Talk to the people there that sent you the emails. Let them know the financial issues, they may have a solution if you cannot afford it. It is expensive.  They got a 15k grant for me to pay for all of the co-payments for the medications. That grant covered the up-front cap on my insurance so that everything is covered at 100% for the year.

      The first treatment I got was for Radicava. If they get you that prescription (Radicava is for Probable or Definite ALS), that should plug you into Searchlight Support. Searchlight got the grant for me, and it took them only a few weeks to get everything authorized and approved to start treatment. IF you are on private insurance (not on Medicare/Medicaid) then you should qualify for a grant to help with copayments. Getting this <span style=”text-decoration: underline;”>before</span> you have the appointments would benefit you immensely because then all your copay cap should have been reached. You may need to reschedule to get this done though.

       

      • #19853
        Anonymous
        Inactive

        Thank you John, that’s VERY helpful info!

        Did you have to have a neuropsychological evaluation in the process of getting your diagnosis? I’m dreading that (4-6 hours of grueling cognitive/emotional testing – I had one a couple of years ago before diagnosis of hyperparathyroidism for memory issues, it was a brutal several hours, very tiring).

    • #19881
      Bill
      Participant

      I did not have cognitive tests as part of diagnosis but did have them as part of an ongoing long term study to find and track bio markers and progression. Lots of memory and logic type tests. I suspect more like FTD tests. I suppose they could be stressful for some but didn’t bother me. Unfortunately that study lost its funding.

      • This reply was modified 2 weeks, 4 days ago by Bill.
    • #19890
      john s
      Participant

      In the last several year’s psych evals have been more common because of the link that they figured out between ALS and frontotemporal lobe issues. I believe that the C9orf72 gene is pretty tightly configured in the mix and is also related to schizophrenia (not suggesting anyone has it, just noting the relationship). Research has shown that about 20%  of pALS will have substantial symptoms of FTD, so they call it ALS-FTD. Another 30% of us will have mild symptoms, some of which are not significant enough to be an issue in our day-to-day function, and others will have minor issues like uncontrollable laughing/crying or other FTD symptoms. In total, 50% of pALS can have some frontotemporal lobe involvement. I think I do because I lose words and forget a lot of things.

    • #19917
      Mike
      Participant

      Hi Anne, I was diagnosed with Sporadic ALS at the Mayo Clinic. The tests were conducted over four days and I believe the EMG test was the conclusive test that verified my ALS.  I did not have any NuroPsych tests then nor have  I had any since entering my ALS Clinic program.  This is not to suggest that the test isn’t worth while. ALS is so unique to each person that what my doctors do for me may not be necessary for you and vise versa.  The question you asked about declining the test is a good one and I’d suggest you discuss this with the doctor as well as a trusted family member or friend.
      Mike

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