Testing

Siouxz

What kinds of testing has your LO had that verified the diagnosis? My DW has had an MRI, that's about it. I understand there are other tests she could undergo that might shed some additional light. I mean, is there a possibility she isn't suffering from Alzheimer's?

She has had two neuropsychological tests. 

This recent Neuro she went to said the diagnosis is debatable. 

Has anyone had the PET scan?

Thank you. 

June45

Besides the standard neurological tests, my husband had extensive blood tests.  This panel included, but was not limited to, B12 deficiency, thyroid function, and Lyme Disease which can all cause poor memory and can be treated.  He also had a CT scan which showed atrophy of the brain.

Ed1937

Siouxz wrote:

I mean, is there a possibility she isn't suffering from Alzheimer's?

There are many conditions that can mimic symptoms of dementia. All possibilities should be ruled out before a diagnosis of dementia is given.

Jeff86

My DW had a PET scan done including 3D volumetric assessment and FDG PET brain.

Test results included findings of cerebral amyloid angiopathy, aneuryms, and AD.  I cannot read the Study Result without tearing up.

Among the devastating information in the report:  “3D volumetric assessment suggests decreased whole brain and hippocampal volumes bilaterally, which are at the 1st percentile for age.”

jfkoc

To answer your question, of course. The purpose of the tests is primarily to eliminate what is treatable.

https://www.mayoclinic.org/alzheimers/art-20048075

Doityourselfer

My husband had a PET scan 3 years ago.  The results of that PET scan were "consistent with Alzheimer's and not other dementia.".

Crushed

Ed1937 wrote:

Siouxz wrote:

I mean, is there a possibility she isn't suffering from Alzheimer's?

There are many conditions that can mimic symptoms of dementia. All possibilities should be ruled out before a diagnosis of dementia is given.

Dementia is actually a SYNDROME , a collection of symptoms.  WHO - Dementia is a syndrome in which there is deterioration in memory, thinking, behaviour and the ability to perform everyday activities.

Dementia is an effect of several different underlying pathologies. Differential diagnosis can be difficult.     

CStrope

Siouxz,  how long has your LO been having symptoms that led you to the MRI?  My DH has only had an MRI so far too, and is scheduled for Neuro Cognitive testing next week.  He did have quick cognitive testing 3 times over the last 2.5 years and didn't do well on them.  Since he is only 66, he managed to convince me that he was perfectly fine and just tired that day, or he had a headache, or he wasn't prepared for the testing.  All excuses to cover up the problems he was having with memory.

I'm hoping to get some sort of answers next week after the Cognitive testing.

French

I first asked directly to a neuropsychologist to do a test because everybody even the psychiatrist were explaining me it was a burn out. But after one year, I knew that what I was witnessing and living wasn’t due to a burn out. The neuropsychologist after a 3 hour test (done in two sessions because he was too tired) directly called the family doctor : memory and concentration issues, acalculia, vision issues...

Then it took 2 months to see a specialized neurologist Who ordered an MRI, à Lumbar puncture  and a pet scan. Another 3 months to get the appointments and results. With the 3 kinds of results, there was no possible doubt. Eoad at 50.

Hopefully, my partner wasn’t reluctant to do the tests. He was worried about not getting out of this burn out. And hopefully also, here all these tests where totally covered by social security so that we hadn’t reason not to gather all the clues

Siouxz

French,

I'm so sorry you had to go through all that. Early on her nurse practitioner for psych felt she had EOAD, we then discussed it with her Neuro who was seeing her for seizures and migraines and from what we were telling him, he diagnosed that as well. We have an appt with another local Neuro to discuss this further as we did not like this last Neuro at all. She asked no questions, reviewed nothing, just said it is debatable. After my asking, she gave orders for PET scan, MRI, and, I think, labs. I was reviewing her last labs and she is deficient in quite a few things and my sister-in-law who is a nurse said that this could cause confusion, muscle weakness. A couple of weeks ago she was using a walker because her legs were just giving out on her. Sidenote: the Neuro she had been seeing was in another state from when we lived in Kentucky. 

French

we have a Memory Center at the hospital in our town. The neurologists are specialists and researchers in this kind of diseases. With our social security, everybody can have access to them, but you sometimes have to wait one year to get an appointment. We were lucky to wait only one month because of a cancellation.

The diagnosis was a bad news but it was also a relief to know exactly what was happening and to be finally understood. People around me were saying I was exaggerating and even stressing him.

JoseyWales

My DH (early onset- finally diagnosed at age 51) had blood tests galore, 2 neuropsych tests ($3,000, not covered by insurance), and a lumbar puncture ($7,000 out of our pocket) to check for lyme disease and MS. Nothing. Neurpsych testing said depression both times. A year of visits with a psychologist, until he said he could no longer help. 

Finally a referral to the big teaching hospital near us. Dr. there diagnosed dementia (by then there was atrophy in MRIs). Dr. wanted to do another lumbar puncture to confirm type. DH refused. Insurance wouldn't cover a PET scan. 

Basically the diagnosis was ruling everything else that COULD cause memory problems. The doctors were very careful about ruling EVERYTHING out. Dementia is what we were left with.

Siouxz

I hadn’t realized it is a syndrome. I’m familiar with that from my son who has Tourette’s. Everything else was ruled out which left Tourette’s. Thanks for that info. 

Susan

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French

I am impressed by the cost of the lumbar puncture... we never had the bill. I can’t imagine the cost of pet scan then.

I will no more vent when I will pay my taxes ! Now all the fees are paid by the social security and even a large part (80%) of the paid caregiver. My time is also compensated (40h per month but at a ridiculous rate, about 4$ per hour).

caberr

My husband had a PET scan and diagnosis was ALZ.  His neurologist went to Medicare to have the test approved so we never saw the bill.

It was hard to hear the diagnosis but after all the other testing showing mild cognitive impairment, then dementia it was good to have a final diagnosis. 

Good luck! 

Arrowhead

My wife also had: CMP (Comp Metabolic Panel); CBC w/differential; TSH w/reflex T-4, free; B12/Folate/, Serum; Lipid Panel, Reflex to Direct LDL if ubducated; MRI: Brain without contrast; Xray Fluoroscopy Needle Loc Spinous

I don't know what any of that means. She may have had other tests as well.