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neuro-psych exams
mish
Posted: Friday, March 14, 2014 1:51 PM
Joined: 6/21/2012
Posts: 439


hi everyone. sorry I haven't been around.  I was wondering how often do you have to take the neuro-pysch tests? I am talking about the 5 hour ones like they gave you when they were diagnosing you. I know you have shorter ones when you see the MD but do you have to keep taking those 5-6 hour ones?  and if so how often.

I would really appreciate feedback. this new MD (that specializes in PPA)  that works with my MD wants me to have ANOTHER one  and I have already have had at least 5. the last one being 2 years ago at the most. I think he can  just look at the other ones. thoughts? It was very, very traumatic for me when I went through them before so I really don't want to go through that again.

I appreciate it and your help as always.

Mish


Iris L.
Posted: Friday, March 14, 2014 3:16 PM
Joined: 12/15/2011
Posts: 18342


Welcome back, Mish.  I'm leaving next week for my trip to Rome.

I had testing in late 2008, then again in early 2012, approx three years apart.  These tests confirmed the diagnosis of cognitive impairment nos.  I improved in some areas and declined in other areas.  The neuropsychologist recommended that I return in another three years.

I don't plan on having any more extensive testing done unless I had a huge decline.  In that case, someone would have to take me in, and I don't see that happening.

I don't see a reason for repeated extensive testing unless there is a suspected change in diagnosis and a change in the treatment plan. 


On the other hand, if a patient is part of a clinical study, the researchers may want to test every year or so as part of the study.  In that case, they should pay for it. 

Iris L.


Mimi S.
Posted: Friday, March 14, 2014 4:22 PM
Joined: 11/29/2011
Posts: 7027


Iris: Rome!!! Tell us more!!!

Hi Mish, I don't think two years with a new doctor is unreasonable. I would like to explore with you why you hate them so much.

Yep, there are things you flunk. Yep, that's why you're going there. Sometimes it does seem they continue a test even after it's obvious that you can't do it. Sometime the parameters of the test require this. Your goal is to not let it bother you.

You go in knowing from past experience that there will be lots you can't do.

However, it's important that you and your new neurologist know the things you can do. That way he can help you accentuate the positive.


Does that make sense to you?


Iris L.
Posted: Friday, March 14, 2014 9:44 PM
Joined: 12/15/2011
Posts: 18342


Mimi, an opportunity came up for me to visit the Holy Lands, somewhere I have always dreamed of going.  I'm taking a side trip to Rome.  I am looking forward to my trip, but the trip preparation and packing is wearing me out.

From my vast experience in dealing with professionals, the only people who accentuate the positive are the people I've met on these boards!

Iris L.

quits
Posted: Saturday, March 15, 2014 8:23 AM
Joined: 12/30/2012
Posts: 3520


Mish, my husband did the neuro-psych tests 3 times, 2 years apart each time and he had improvements or declines in the 2 later tests.


 I was told that is normal based on what areas you are using more in your day to day life and changes in the brain.  


His last neurologist who confirmed the FTD/EOAD diagnosis said he didn't see a reason to put him through any more neuro-psych tests because it taxes the brain and emotions and we already had a diagnosis.


I hope if you do the tests, it is to help you with treatment plans.



Iris, how exciting!!! Good for you!

LaQuita


Iris L.
Posted: Saturday, March 15, 2014 1:45 PM
Joined: 12/15/2011
Posts: 18342


Thanks, LaQuita

 

Mish, another way to approach your decision.  The purpose of tests is to help with diagnosis, to look for changes, or to establish a baseline.   

 

Ask the doctor what would be the purpose of doing the full 5 hour neurocognitive tests at this time?   

 

Tell him your concerns about not wanting to put yourself through this long testing.  What is to be accomplished?  Does he have a sound medical reason?

Patients are supposed to be in good condition for the test.  If you are anxious or upset or disinterested in performing the full test, your emotional state will skew the responses and possibly make the conclusions unreliable.

There is room for discussion.  Also ask, what would be lost if you did not do the test at this time? 

Iris L. 
 


mish
Posted: Saturday, March 15, 2014 2:02 PM
Joined: 6/21/2012
Posts: 439


my regular neuro cant put an exact name to what is wrong. he knows there is the ftd aspect and the ppa aspect  but they also found the tau in the spinal tap.  he is frustrated basically. so he wants his friend to see me to see if what he is doing is right and his friend specializes in ppa. But I have had so  many of them and they truly have been traumatic. I looked and one was done a year ago and no significant changes have been noticed. I needed speech therapy but medicare denied me. I am going to refuse to have another long test because you are right it gives me HUGE anxiety,  and my family and therapist agrees.  I just wanted to know how you felt and your thoughts, which is greatly appreciated.

Iris- you will love Rome.  if you have any questions email me and I will do mu best to answer them. I had a great time there!

safe travels my friend!


Mimi S.
Posted: Saturday, March 15, 2014 4:12 PM
Joined: 11/29/2011
Posts: 7027


Iris,

I'm thrilled for you. Have a wonderful, wonderful time.
Are you going with a group? Friend?
Hopefully, you can get a break from crowds and noise as you need it.
Do you have any "must sees" on you list?

Iris L.
Posted: Saturday, March 15, 2014 4:49 PM
Joined: 12/15/2011
Posts: 18342


Mish, I still have notes from what you told me about your trip last year.  They were very helpful.

Mimi, I'm going with a group that specializes in a Christian focus on the Holy Lands and Rome.  I'm interested in everything they have to show me.  We are going to walk where Christ walked.

Actually, the preparation and planning is very bothersome.  I try to do a little each day.  I'm trying not to get overtired before the trip.

Iris L.

Vita99
Posted: Sunday, March 16, 2014 4:40 AM
Joined: 9/4/2012
Posts: 469


Iris, what a wonderful time you will have.  The first place I am going when I am able to travel is Italy.  How long will your trip be?  I am exited for you as  you have mentioned that you would like to do more and perhaps get more gusto out of life.  
cmak
Posted: Sunday, March 16, 2014 5:44 AM
Joined: 1/12/2012
Posts: 1432


Hi Mish -

 

I have been on these boards before, I'm always on the " spouse" one, but thought I would take a look here today.

 

My Dan is 59, EOAD, diagnosed at age 56- but of course with symptoms for several years before that.

 

He was diagnosed by our local neurologist after ruling out several other diagnoses.  Once we applied for  SS,  their work up included the neuro-psych exam that took all morning.

 

He was extremely agitated when we left there,   he reports that he  felt " stupid" -  I'm guessing because he couldn't answer properly.  He has always been very self conscious about his poor reading /writing skills- dating back to high school. 

Hence, we have never gone any further with any kind of testing,  treatment, etc.

He is willing to see only his local GP - who is a personal friend- but no other doctor.   Also I have had to request they no longer administer the MMPI , because once again it agitates him - and they are fine with that.  We get our medications from there and we go about every 6 months.

 

I hope you have a wonderful time on your trip !!!

colleen

 

Maybe I'm too passive, but I really think this is the best route for him. 


Paul Hornback
Posted: Monday, March 17, 2014 8:35 AM
Joined: 8/9/2013
Posts: 584


Mish, I too have trouble with the exams. I'm part of a lifetime study that requires my taking a series of tests every year to track my progress over my lifetime. I usually get frustrated after the exams because of my poor performance. However, I realize this is for a great cause and I know it is important for me to participate. Good luck with whatever you decide to do.

 

Iris, have a great time on your trip. It is the chance of a lifetime! My prayers are with you for safety and enlightenment to all God has in store for you while on your trip.

 

God bless,

Paul

 


Iris L.
Posted: Monday, March 17, 2014 10:14 AM
Joined: 12/15/2011
Posts: 18342


Thank you for your blessing, Paul. 

 

Vita, I will tell you about my trip when I return.


Iris L.

 


JK7997
Posted: Wednesday, April 20, 2022 10:10 PM
Joined: 6/30/2021
Posts: 1


My DW was diagnosed with EO 1-1/2 years ago.  Her current symptoms indicate that she is in late-middle stage.  Her primary physician already had her on Donepezil, Rosuvastatin, and Memantine before the neurologist prescribed it.  Is there any benefit to the "patient" to continue neuro-evaluations as the disease progresses?  Her primary physician is taking very good care her physical health.  I don't see a reason to put my wife through the stress of seeing the neurologist for periodic evaluations.  Am I wrong?  

Thank you. 


LaSeuss
Posted: Thursday, June 2, 2022 1:34 PM
Joined: 1/24/2021
Posts: 1


I have not been able to find anywhere that my husband can get these tests done. I want to get a baseline assessment of where he is at cognitively. We are in Los Angeles. He is 64 and on Med-Cal and it seems that no one that does these test takes Medi-Cal and we can’t afford to pay out of pocket for them. He is not eligible for disability because he has only ever been a musician and was never on any payroll. We’ve tried to find any kind of job for him but since he has cognitive deficits it makes it really hard to get hired.  Can any one make a suggestion? I feel really stuck. Any advice is appreciated. We are hanging by a thread.
Jo C.
Posted: Friday, June 3, 2022 3:40 AM
Joined: 12/9/2011
Posts: 13462


Dear JK and LaSeuss, a very warm welcome to both you.  I wanted to give you some information that may be helpful in getting feedback:  Unfortunately, both of you are buried in someone else's very old Thread from 2014.

I would like to suggest that you go to the Spousal Forum as it is very well attended and using the green prompt at the top of the page, "Add Topic," that you begin your own Thread; you will get much more input that way. The Spousal Forum is also well attended, as well as very dynamic and supportive. Just click on the "Add Topic" prompt, then enter the title of your subject in the small box, then immediately drop down to the larger blank space that is just like this one and begin your input. Some Members will answer fairly soon, but do keep looking for several days or so as not all Members are on every day and you will probably continue to get answers.

JK; it may that the dementia specialist wants to know specifically how much more the dementia has evolved and in what ways - what areas of impact it is specifically having; you can actually ask the physician why he/she wants to perform the testing again, and explain the difficulty and whether it is worth the disruption to your Loved One, (LO).

LaSeuss, it may be difficult to find a dementia specialist that accepts Medi-Cal; Neurologists and Geriatric Psychiatrists are the two dementia specialist groups that come to mind, however; both UCLA and USC have specific dementia care departments/programs.  Being that they are university based, you may find that they may be helpful.

UCLA information:

https://www.uclahealth.org/dementia/

Insurances accepted by UCLA does include Medi-Cal:

https://www.uclahealth.org/patients-families/billing-insurance/health-insurance-accepted

You can find their phone number at the bottom of the page.

***********************************************

USC Information:

https://www.keckmedicine.org/centers-and-programs/memory-and-aging/#:~:text=The%20USC%20Memory%20and%20Aging%20Center%20provides%20diagnostic%20and%20treatment,of%20memory%20and%20thinking%20skills.

You may wish to contact them to assure they do accept Medi-Cal; when I went to the prompt for insurance and billing, I clicked on the blue link that said, "click here."   In that lengthy table of insurance (listed alphabetically) that is accepted, I did see Medi-Cal, but you would want to double check that by calling.

Those are just two possibilities, doing further computer searches may bring you more information.  Will your husband be able to receive Medicare at age 65 which would be soon, or does he qualify at a later date?  If he does not qualify for Medicare by his own record, if you will qualify for Medicare, he can more than likely obtain Medicare coverage through your record.  Medicare is accepted by most providers, so that is why I ask the question.

Anyway; do try going to the Spousal Forum, it is a welcoming place and as said, will provide much better support. I wish the two of you the best as you continuee forward on your caregiver journey.

J.