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A year ago our GP scheduled a MRI and an appointment with the local neurologist (there is only one).


The neurologist did the standard test...followed by bloodwork...


Without going into the details again (I already posted my experience with the neurologist...which was horrible imho)...He gave her medication of which she had a violent reaction...)


Since I was still working at the time I elected to not give her the medication...I could not afford for her to react that way when I was not home.


I discussed this with her GP and that I had made the decision not return to the Neurologist.


I think some patients can handle the diagnosis better than others....my wife is not one if them.


I think returning to the neurologist would be too traumatic for my wife...and research has not shown that treatment has provided that much relief...Since her initial diagnosis I have retired.


She has her yearly visit with her GP again in a couple if weeks...and I will discuss my thoughts with him again.


I guess my question is....Should I start the neurologist process all over again?


I am just not sure how to proceed.


Am I being overly protective?

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So, the standard test (a mini mental exam) is certainly NOT the gold standard for dementia testing. When you score below "normal" you are generally referred for further testing. A full battery of neuropsych testing. A cognitive evaluation (IQ test), physical tests and a more extensive neurological exam.

Have they POSITIVELY ruled out normal pressure hydrocephalus?

Can you tell us where you can located?
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Timyom Jun 19, 2019
I agree totally..I can’t that they ruled out NPH...but she does not exhibit shuffling sometimes consistent with the diagnosis....
Her MRI did show Chronic senecent changes...short of quoting the entire mri...
We are in Southern Oklahoma...
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Been mulling.

She is pretty young for Alzheimer's. Have you noticed any changes, up or down, over the last twelve months?

I'd guess it might be worth repeating the MRI for comparison.

The trouble with a diagnosis such as the one that was reached is that it can stop even good practitioners asking enough questions.

Are you still not able to talk to your wife at all about what she wants to do?

PS, sorry, that's rubbish, what I just said - she's not young for Alzheimer's. I mean, she is pretty young and if it were Alzheimer's wouldn't you expect things to be galloping along a bit?

What was the traumatic event that put her in hospital, if you don't mind my asking?
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Timyom Jun 19, 2019
Well...she is 72...and the symptoms were mild for many years...but it wasn’t until a year or so ago that her GP felt it was time for a neurologist...
The neurologist gave her the standard test...which she failed...
He followed up with blood test..

Well...it has gotten worse over the years...It is hard for me to be objective about any changes since I am so close to her daily challenges...What isn’t normal seems normal to me sometimes...
Does that make sense?
So the tragic incident I refer to was a near fatal dog attack (keep in mind that she had previous symptoms)...
While in the hospital they asked if she had dementia....this question comes up (privately) from other Medical professionals when she sees then..
My wife does not recall the neurologist appointment...but she insists she is ok...
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So, you are asking specifically about her "treatment plan".

She had an MRI, EEG and blood work to rule out other causes of her confusion like Thyroid, normal pressure hydrocephalus and a vitamin deficiency.

While you certainly COULD pursue neuropsych testing, I'm not sure what value it would have for making a plan.

The neurologist was/is an insensitive jerk. One of the wonderful things about my mom's neuropsych workup was the very gentle way in which the neurologist talked to my mom about her cognitive issues; how he told her that she (an we!) were doing all the right things (we had moved her into an Independent Living facility where she had more socialization and better nurtrition than when she was living alone at home in an isolated suburb).

He and his team were more than willing to be the "bad guys", both in terms of telling mom that she was in the right living situation, and in explaining to my brother (who thought that mom's anxiety was just a "pity party") that there were real brain changes going on.

Again, I think that getting a geri-psych lined up is much more important than further neuro testing. I'm not sure I see any added value in that avenue.
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Timyom Jun 19, 2019
Yes...she had the MRI...EEG and blood work...and how I wish I had your experience with our Doctor...
I was just never able to trust them again.....and that is what I told the GP...that it wasn’t my job to be the bad guy...he understood...but...
The reason I posted my question...I just want to do what is best...and it seems like “best” is hard to define...
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No, you're being half-assed. Sorry, but you are. Not your fault, even, but you are.

I had to go looking for your thread about what happened. I completely agree that the neurologist behaved like a total numpty - he'd probably just read some exciting 'break bad news like a pro!' article and thought he was being clever and hip; God knows what was going through the pea-sized communication centre in his mind; but I don't care and neither should you.

The point is that you must not allow his being a t**t to put you off pursuing a thorough and conscientious approach to diagnosis, monitoring, treatment and care planning.

Should you begin the neurology process all over again? Yes, but. First things first: how is your wife doing?

You may, also, it's possible, be being a bit over-protective. Or more, fearful than over-protective. Have you had a chance to read a range of literature on living with dementia? The thing is, this is not a diagnosis that many people handle well - especially at first. But the experts in dementia know that, and helping their clients and patients and families through it is something they're pretty good at.
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Timyom Jun 19, 2019
Thanks for an honest response...and taking the time to read my initial report..yes...I have read and researched a tremendous amount in the subject and researched her MRI results...
”Diagnosis, Alzheimers Dementia without behavioral disturbances”
My GP will likely not refer her to another Neurologist since the closest one that is not local is 100 miles away....I would have to do my own research..which I am certainly willing to do...
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For the record, Alzheimers is one form of dementia. If you go to the Alzheimer's Organization's website ( alz.org), you'll see that there are many, many different forms of dementia.

My experience, for what its worth; my mom was initially diagnosed by a neuropsych team at a major rehab hospital with Mild Cognitive Impairment. This sometimes advances to dementia and sometimes remains stable. The MRI that was done at the time of the workup showed evidence of an old stroke that we did not know about. Mom was not put on any meds except those to manage her overwhelming anxiety (which was the symptom that caused her geriatrics doc and geriatric psychiatrist to refer her for cognitive testing).

Mon had a stroke about a year after this dx. She went on to develop Vascular Dementia. We saw a neurologist who did not think it wise to prescribe any dementia meds. Given my mother's extreme sensitivity to meds of all sorts, I probably would have turned down the offer.

These meds don't cure, they seem in some cases to postpone the inevitable. In your shoes, I'd be more apt to be looking for a geriatric psychiatrist to prescribe (when and if needed) meds for agitation, anxiety, depression and behavioral symptoms.

I'd also have a consult with a well-qualified and NAELA or CELA-certified eldercare attorney to get your financial ducks in a row and make sure that you understand what is and isn't allowed in terms of transferring assets if Medicaid is a possibility.

I'd also start investigating facilities like rehabs, memory care and Nursing Homes.

You never know when an acute event might occur which would totally change her level of need. You also have to consider the fact that YOU might end up ill or incapacitated yourself, rendering her in need of care.

Dear man, ((((hugs)))) to you and good thoughts to you on your journey.
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Timyom Jun 19, 2019
My wife has a tendency to get very nauseous...
She started the medication that the Neurologist prescribed the day after she saw him...she did not react violently...so the next day I gave her the next dose and went to work...I called her a couple of hours later and after numerous attempts to contact her unsuccessfully...I rushed home...
She was lying on the floor crying, throwing up and unable to get up...
I immediately called the neurologist office to tell them what happened....basically after the discussion...their response was....”are you going to give her the medication or not”...I told them I could not do that since I couldn’t be home to monitor her reaction..
I sat there on the floor with her for a few hours before she could get up..put her to bed and stayed up all night watching over her...
I discussed this with her GP...but he really didn’t offer any alternative...
My research shows that the medications provide a little relief...
Now that I am home all the time I feel I am better prepared to watch over her...
I have previously thought about a psychiatrist....and consider that a viable option...but there is no one locally...
So....we would need to travel for that..and I am certainly not opposed to that..
I want someone that is compassionate ...
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