saw neuro- are these tests really helpful?

Berryette

We saw a neurologist last week.  This is the first time I actually got my husband to go- although we are at least 4 years into this journey.  He has said ok, then changed his mind when it close to the appointment.

The doc put a diagnosis of Alzheimers on his chart.  But is that really possible without any testing?  And the diagnosis doesnt really change anything we will do- does it?

Doc ordered a brain MRI, EEG, and Carotid Ultrasound.  I am torn-  will it even change anything that we do for my husband if he undergoes all these tests?  Or will it just aggravate and upset him?  

Also, his primary care physician started him on 10mg Mementine daily.  He has been on it for a month.  No side effects that I could discern.  The neuro upped it to twice daily and husband seems way off.  He sits in the kitchen staring out the window or outside staring off.  I finally asked him if he felt drugged and he said he just feels like he is way out there.  Has anyone else had experience with this medicine?  Will he adjust- or should I stop it?

I would truly appreciate any advice you all might be able to give!!

Berryette

Army_Vet60

He did ask my husband lots of questions.  He asked how many children he has.  Hubby answered 4.  He has 3.  Could not think of all their names.  It is so hard to watch.  We live in our own small world here at home and he does well.  But taking him out with others where he has to interact makes it so much more obvious.  He could not remember the nurse and she had cared for him with another dr for years.  Thank you for your insight.  

Rescue mom

No real simple answers…teasing out the various type of dementia—Alzheimer’s, vascular, Lewy Body, etc.— can matter in terms of medications given (or not). The behaviors we have to deal with, though, are very similar no matter what kind.

Sometimes you need a Dx to get certain, narrow benefits, such as early SS help, or some special insurances/pension plans, especially if he’s under 65.

I think a dementia is often apparent from conversation and reports from reliable others. There is a “mini-test” of 10-15 questions many docs use for Dx.  As said, the behaviors are what we deal with, and they are often the same.

My DH with Alzheimer’s saw a neurologist, and other “experts” and docs, during the testing process, which lasted about an hour, over several days, and included brain scans. The neurologist did the Rx for Namenda and Memantine, and advised me to start looking for home help and a support group. That was the extent of the neurologist, for us. Others here had more helpful neurologists.

The PCP was worse than no help. He shrugged off DH’s problems until we had a major public incident. That finally convinced him to send DH to the local Alzheimer’s clinic (which required referral).

I wanted the tests, doctors, and clinic then because I thought they could tell me more specifically about how and when the disease would affect DH. Now I know there really aren’t any answers to the questions I had.

The scans, though, were very helpful because they showed indisputably that his brain was not normal. That helped with some family who insisted there was nothing really wrong, he could still do things “if he really wanted to.”

Those two drugs had no effect on DH that we could tell. But no harm, so we did them. Maybe the disease would have progressed faster without them?? No way to know that. Anyway, we stopped both after a year or so.

The geriatric psychiatrist—needed for the “big gun” drugs when DH had delusions and hallucinations, was the most helpful of all.

Berryette

I started to type how happy I was for you- that you had shared interests to keep you connected- but that seems wrong to say since  I am not happy you are going thru this.  Work was my husbands only interest.  He is 80 and only retired 4 years ago because his memory issues would not let him continue.  He went thru the stage of thinking I was trying to poison him.  He still says that he thinks I am making things up to confuse him.  I guess the only thing that he has an interest in is our pets.  I am grateful for that, for sure.   Thank you again- take care.

Berryette

Rescue Mom-  thanks for taking time to answer.  The fact that the testing might help determine the type of dementia and in turn what medicines are best is a big help to me!!  I hadnt thought of any of that.  Thank you!

Berryette

I am sorry for your loss.  Thank you for sharing your insights!

Dio

Thanks for this post. I was just wondering the same about whether a neurologist will help or not. We have an appointment in August (yes, wait time is 2 months out). I keep asking "so what?" It's dementia!! Does it really matter which type and/or can a neurologist really determine the specific type (yes, I get it...for the right meds)? When my DH's psychiatrist suggested doing a gene test, I asked again "so what" if it is genetics? What I need to know is what can be done, but no one can give me the answer. Sorry, I'm just frustrated.

Berryette

Dio-  I get it!!  All of it is frustrating!!  The worst part is the person you talked things thru with and depended on to help make the important decisions is no longer able to follow a path of thought.  I make myself sick worrying whether I am making the right decisions.  Giving the right meds,etc.  I pray and turn it over to God- but then turn around and pick all the worry back up again.  Thankful God is patient with us!!

Ed1937

The only thing the other tests are for is to rule out anything that could possibly cause the symptoms. There are many conditions that could cause dementia like symptoms, and a few of them can be successfully treated to eliminate symptoms. 

My wife was diagnosed more than four years, and that's the last time she saw a neurologist. There's nothing they can do but try a few medications to possibly help symptoms.

jfkoc

It is critical to rule out the many treatable causes of dementia...hormones, depression, vitamin deficiency. This part of the process is often done by  PCP.

Once those things have been ruled out you progress onward with tests because you are left to determine what kind of dementia...important because, as dicussed above, the drug are different. 

Please also be aware that an initial diagnosis may change over time as symptoms become apparent. My husband went from MCI to Parkinson's to LBD. 

There is a lot online about diagnosis. Your job is to make certain that any diagnosis followed proper protocol and as in any field you may need to search for the correct Dr. and not all neurologists are familiar with dementia.

Quilting brings calm

The other reason to do these kinds of tests and to determine whether there are structural vascular problems(strobes) are because different types of dementia have different progression rates.  Sone are gradual declines. Some  are like stair steps- the devil w happened suddenly, stabilizes for a while and declines suddenly again. Sone have longer life expectancies than others.  Both the rate of decline and the average life expectancy help you determine what to do when.    Alzheimer’s has an 8-10 average life after diagnosis.  Other dementia types are shorter. However averages  are averages, many people live much longer 

Some  types of dementia have different symptoms than others.  FTD is often associated with behavior issues.  Again something you will want to know about sooner than later. 

KathyF1

My DH saw a neurologist 4 years ago. He did a simple cognitive test, then an MRI. His test results showed cognitive decline, the MRI showed “white matter changes”. He put him on Namenda. He also referred him to a neuropsychologist. The testing with her was extensive- 4 hours. When we went to discuss the results she simply said she suspected early Alzheimer’s. For us, I felt it was not productive. It just upset him. I didn’t see any benefit from the Namenda either, so we stopped that. Now I don’t do anything that makes him “face” the disease.  I’m just trying to keep him happy.

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Arrowhead

Talking to the patient can offer clues, but there are tests that are needed for a proper diagnosis. However, once that happens, further tests don’t help any. My wife’s doctor and I are both of the opinion that medicines should be kept to a minimum because of possible side effects. 

Joydean

Dh saw neurologist who referred us to neuropsychologist. We had done the MRI and blood tests. When the neuropsychologist started asking dh questions dh got very upset and told him to “just leave me the—- alone “.  That ended those tests. Was diagnosed in 2017 with dementia and in 2020 as Alzheimer’s.  He sees psychiatrist every 3 to 4 months just to monitor the meds and to see if they need to be changed.

Dio

Our August appoint with neurologist just got moved up to this Wednesday...wow! My DH's psychiatrist is working overtime to get us in sooner. He was the one who had contacted the neurologist to get him to see us in the first place. But when I told him our appointment wasn't till August, he was quite upset, so he must've called the neurologist back to move us up. I'll report back if anything interesting develops.

Pat6177

My DH is on Donepezil since Nov 2020 with some minor side effects. Dr put him on Memantine Dec 2021. Starting the end of Feb, he’s been complaining of feeling woozy. We see the doc again in a few weeks and I think I’m going to push to stop the memantine. Impossible to know if it’s helping, I’ve only seen a steady decline since DH started on it. In addition to the wooziness, he’s had gait and balance issues and a few delusions.

Dio

Update on seeing neurologist today...

Good news: He doesn't think it's FTD.

Bad news: He's baffled! but will consult with faculty and Memory Disorders Clinic... so it'll be another long wait and see.

Berryette

Dio-  Will be praying for more good news- quickly!!