Testing decisions?

Anna2022

My DH is scheduled for a follow-up this week with his neuro-psychiatrist, a specialist in the dementias. The doc wants further testing, possibly PETscan, lumbar puncture, or that 4-hour neuropsychological exam. Dh has been so very very reluctant to go to the doc; its taken two years to get him into the doc in the first place. So far, he's had a MoCA and MRI. DH will probably agree to one more test before balking completely. Which one would give us more "bang for the buck?"

I'm leaning toward the least invasive which I think is the PETscan. News reports indicate that it seems to now be covered by Medicare?

Thanks for your input!

M1

Hi Anna, the PET scan is probably the easiest to accomplish but perhaps the least likely to yield diagnostic information. The 4-hour neuropsych testing would give you the most diagnostic information because dementia is a functional, not an anatomic diagnosis--but it will obviously also be the hardest to accomplish.

Before you make a decision, I would ask the neuropsychiatrist what difference any of the tests would make in his care. that's true of any test you order: you need to know ahead of time how you are going to use the information from the test. Will is change how he is treated? If not, why are you doing it? That's the key question I think.

Anna2022

@M1 Thank you, M1 - what you say makes good sense!

jfkoc

Ditto. What point is a test if it cannot improve the situation.

Dio

Completely agree with M1. In our case, DH had 3 MRIs and EEG (looking for epilepsy) done during his hospital stay, and although MRI showed some frontal temporal shrinkage, it was inconclusive and the battery of tests all came back negative. DH was clinically diagnosed as severe major depressive disorder at this time, not a physical neural problem because of the negative test results. However, with that said, it's important to know what exactly are they looking for. Anyhow, after discharge from the hospital, DH went through 32 sessions of Cognitive Behavior Therapy to no avail. In fact, his mood got increasingly worse. Then we did the neuropsych eval because his newly anointed psychiatrist had suspected some form of dementia like Frontotemporal Dementia due to the shrinkage of frontal temporal region in the brain. The test proved degradation in all reasoning and executive functions. He couldn't even finish one of the tests cuz he couldn't follow the "complex" instructions. A 4 hour test lasted nearly 6 hours. It was confirmed then that he suffered from some form of dementia but didn't know which one. More tests ensued including one more MRI (to determine whether it was a rapid progressive form of dementia due to his fast decline in so many areas) to see how much his brain had shrunk in 10 months, but was nominal. Sadly while he was in the hospital and had undergone a spinal tap, they didn't look for dementia biomarkers, and just looked for possible infection of the brain. So we scheduled an appt to do another spinal tap but the technician quit (what timing?!). We never got it done because his neurologist moved to do a PETScan specifically looking for B-Amyloid plaques. Since none was found, it helped to rule out Alzheimer's Disease in conjunction with other biomarkers. So in looking at DH's overall behavior and physical symptoms, he's finally declared probable Lewy Body Dementia. I share this long story only to highlight that no matter what test is prescribed, it's important to know what exactly are they looking for and how does that help with treatment. Don't be afraid to ask questions. I do think it's important to find out which disease is causing the dementia symptoms in order to provide proper medication care plan.

storycrafter

I echo the neuropsychologist's testing as most helpful of all of them. My husband's testing was split up over three different sessions the first time. A couple years later the same neuropsych re-tested and the change over that time was most interesting because the doctor could compare my husband with his own baseline scores.

The kinds of losses in the various areas of the testing were telling. Combined with my notes/observations which I provided a written record, the doctor was able to confirm his diagnosis. He also gave helpful advice about how to communicate with my husband to handle the decline in some areas.

As mentioned above, our experience has been ... knowing the type of dementia is very helpful for determining medications.

LJCHR

My DH had an MRI initially which indicated moderate to severe brain atrophy to temporal and parietal lobes.

He had the initial testing and then 4 hours with Neuropsychologists. The diagnosis was MCI concerning Alzheimer's. He begin taking Aricept. That was 2 1/2 years ago.

We talked to our Neurologist about test to determine if it's Alzheimer's. He said the two test were petscan (which back then insurance didn't cover) and the spinal tap. And neither of them was 100%. We decided that DH would not undergo any more testing - it's hard on him - and why did it matter - dementia is dementia and there is no cure.

Good luck with your decision - it is a tough one to make.

WIGO23

My DH was misdiagnosed with Normal Pressure Hydrocephaly initially by a neurologist. NPH is treatable, so we were relieved until we pressed on with a second opinion. I believe in second opinions for any life altering medical problem or concern.

We are very glad DH did continue through all the testing. The neuro-psychology exam, MRI and lumbar puncture were worth the effort because the diagnosis of ALZ became clear. The very best decision we made was traveling 1500 miles for world class care for a second opinion.

Anna2022

Thank you all!

I will take the information with me (in heart and mind) to our appointment tomorrow, Friday.

M1

I'll be interested to hear how it goes Anna. So many decisions to make, none of which are easy.

tgeno

My wife had a MRI and CTscan of her brain which were inconclusive the 4 hour neuropsych exam led to the early stage Alzheimer's diagnosis and was the most helpful. We are not pursuing PET or lumbar puncture because we don't believe it will give any more useful information. They are expensive and likely to do nothing more than confirm the neuropsych diagnosis.

SDianeL

Of all the tests my DH had the 3 hour Neuropsych exam was more helpful. He can't have an MRI but did have a CT Scan which show white matter shrinkage. The Neuro Psyche exam showed bizarre behavior with visuospatial difficulties. The Psychologist said he should stop driving immediately. He couldn't draw a clock face. She was very patient during the test and took breaks when he got agitated. The initial diagnosis was Dementia-Probably Vascular but recently based on his behaviors they looked back at the CT Scan and the test and said it was consistent with Alzheimer's - Posterior Cortical Atrophy which affects vision. So if he already has a diagnosis, I'd say the Neuro Psyche test would reveal more. My DH is Stage 5 going into Stage 6 and I now limit any unnecessary testing.

Anna2022

UPDATE: Well, DH actually agreed to attend his follow-up with the neuropsych doc this AM via Zoom. He continually and steadfastly refuses to believe that anything is wrong - his anosognosia was on display for sure this am. The doc was patient and direct, but talking a lot about medications. I think the doc is convinced that its ALZ, but DH refuses to believe and therefore is not interested in medications. After that became clear this am, we moved onto discussing further testing, not for treatment purposes but for pinning down ALZ and/or FTD and maybe getting the "evidence" that DH wants/requires. In the confusing mix of DH anosognisia and the doc's information, it became clear that DH will not sit for further neuropsych testing and he is definitely not interested in a lumbar puncture. We are left with maybe, just maybe getting him in for a PETscan. He says he will do it for me but that is "a waste of time as I have no problems." I guess this is progress?

trottingalong

My DH had the 6 hour cognitive test 7 years ago and MRI. Inconclusive. His grandfather, mother, 3 aunts and 2 brothers all had what doctors consider Alzheimer’s. My DH IS 79, I’m 67. He refuses to be tested again. He says what’s the point. HE is well aware of his declining short term memory loss. I agree with him. Nothing will change what’s happening to him, and nothing will change the care I give him. His primary understands what’s going on. So I agree with others. Decide what benefit the tests are to both you and him.

MHWood

Hi all, I am new to the forum, and already appreciate the knowledge and support! My mom is very clearly suffering from MCI and so far, this is all they will diagnose her with, despite the fact that as a family, we see tremendous memory loss. She is a very intelligent, well-educated woman, and still performs extremely well on the short tests like the MiniCog. We would like to have a full neuropsychiatric evaluation, but her geriatrician is reluctant. Two questions. 1) What is the full battery of tests called? 2) Any advice on making this happen? She is willing to take the tests, and if for no other reason, we'd like to have a baseline (as some members above have mentioned). Thank you.

Anna2022

https://alzconnected.org/discussion/comment/205484#Comment_205484

Welcome, MHWood! I think you will get answers to your questions faster if you begin a new thread with your questions. This thread is some 6 months old and a bit buried in the past.

MHWood

https://alzconnected.org/discussion/comment/205490#Comment_205490

Thank you! Will do!