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Questioning the diagnosis?
Posted: Tuesday, September 12, 2017 10:28 AM
Joined: 7/28/2017
Posts: 23

Does anyone ever question the ALZ/dementia diagnosis?   

Last week, I ended up in the ER with my mom - she had a double UTI - two different bacteria.   Once she got through the antibiotic she seems really good now.

could she have a chronic UTI???  Have any of you ever gotten a second opinion on the diagnosis?

Maybe I'm just reaching...hoping for better outcome.

Posted: Tuesday, September 12, 2017 11:35 AM
Joined: 12/4/2011
Posts: 16459

Questioning is always good. That is what an advocate does. What was the total procedure for diagnosis. Here is some info;

Posted: Tuesday, September 12, 2017 1:01 PM
Joined: 7/28/2017
Posts: 23

Her primary dr. did his assessment last June (2016) and sent her to a place in DE Swank Memory.  they did a cat scan and some bloodwork and then the same in-office exam as her primary.  Even gave her the same 3 words to remember:  apple, table, penny.  

Diagnosed her, saw her one more time, 3 months later, and that was it.  Never any talk of medicine or supplements or diet.  All he said was "she needs to be in assisted living or at least not living alone."

I know I'm grasping at straws here but what if she has a chronic UTI???   That can cause dementia symptoms.

Anyway, just grasping at straws here I know.  

It's been a very tough, emotional 3 weeks with her. 


Posted: Tuesday, September 12, 2017 4:07 PM
Joined: 12/4/2011
Posts: 16459

Did you see Dr Ellison?
Posted: Tuesday, September 12, 2017 5:29 PM
Joined: 1/7/2017
Posts: 102

No harm investigating everything you can think of. Just be aware that some elderly have chronic bacteremia in their urine that is benign, and if you treat it you raise the risk of UTIs. So be sure if you later find bacteria that the interpreting doctor knows the difference.

It sounds like the doctor hasn't ruled out sleep apnea and need for CPAP during sleep. Definitely ask for this too, if nothing else to plug a possible vulnerability.

Which blood labs have they run?

Mimi S.
Posted: Tuesday, September 12, 2017 7:10 PM
Joined: 11/29/2011
Posts: 6938

Hi Stitcher,

From your library ask for a copy of Doriswamy and Gwyther The Alzheimer's Action Plan. Compare what's in there with what she was given. The three word memory test is only one small part of the neuro-psych she should have recieved. It's useful as a screening tool, but not a diagnosis based upon it.

Do you have a large Medical Complex or University with a dementia department aywhere yoiu can get to.  It's worth an overnight hotel stay to get a proper diagnosis.

Posted: Thursday, September 14, 2017 3:18 PM
Joined: 7/28/2017
Posts: 23

She saw Dr. Lanny Edholson.

they did the 3-word memory test; had her draw a clock face, write a sentence;  also did a cat scan and some bloodwork. 

A lady at my church takes her husband to the U of Penn Memory Center and I'm trying to get her an appointment.  Just for a second opinion.


Posted: Thursday, September 14, 2017 4:47 PM
Joined: 12/4/2011
Posts: 16459

This is what Swank says they do;

  • Initial history and other screening assessments are performed on-site. A full battery of assessments is available to help us understand a patient’s cognitive, functional, and behavioral status.
Three words and a clock test? NO! No med discussion? NO!
The diagnosis may be dementia but what kind? The dementia may be the result of something treatable.

I would get the earliest appt at Penn. It may be months away but go.

Posted: Thursday, September 14, 2017 10:52 PM
Joined: 9/14/2017
Posts: 1

Hi Everyone,

I just joined this group today and I have some questions that I would love some feedback with. My mom was diagnosed with dementia a year ago and I struggle with understanding her symptoms and how I can best help her. I'm also struggling with self care as I help her. I plan on resigning from job soon to find employment that is less stressful/more flexible, so that I can help my mom more. I don't always receive help from family when they say they will help with something. It has been very frustrating and I don't want to take it out on my mom because my stress level is so high and I know she needs me to be very patient with her.  What are some things that have worked for you all in the past/are currently working for you?  Thanks!

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