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Mild cognitive impairment: What questions to ask the neurologist?

Posted by sb4ca @sb4ca, Jul 8, 2023

I have been having increased problems with word retrieval, forgetting the subject in the middle of a discussion, not knowing how to spell words that I've always spelled in the past, missing important meetings etc. My neurologist had me take a cognition test and did an MRI. Both showed mild cognitive impairment. I really don't know how this advances or how rapidly. My meeting is tomorrow. Does anyone have suggestions on what I should ask?

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pb50 | @pb50 | Mar 26 11:54am
In reply to @misspatty "Thanks so much for your reply. I was referred to a neurologist by my Primary Doc..." + (show)
@misspatty

Thanks so much for your reply. I was referred to a neurologist by my Primary Doc because of a short amnesia event and moments of "lost" words or names that I know, but my mind just sort of paused. Also I have felt off - just not able to concentrate very well and distracted easily. The neuro clinic gave me a memory test that I did pretty well on. I had an MRI which showed nothing at all abnormal. They suggested I get the bloodwork P181 to see if I had the biomarkers associated with Alzheimer's. The bloodwork showed my numbers were High. They said I am in the early stages of Alzheimer's progression. Now I am having a PET scan this week to help confirm this diagnosis. Honestly, I have a million questions and concerns about starting the infusions. The list of adverse effects is long and scary. I'm being very consistent about exercise, very healthy diet, social life, and activities that exercise my brain. I have faith in God and know He and my family and friends will walk with me through this. But it's scary, isn't it? I hope you have a wonder support group that will be there for you. Please let me know how you are doing as you go to next steps. Blessings.

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One more thing… ask your doc how long the drug is expected to delay the worst of Alzheimer’s. I don’t know that I want to make it last longer - depending on which period of time we’re talking about. And by how much? With the side effects they describe, I might not want to take that risk for an expectation of only a six month delay. And once I’m in the period I can’t live by myself, I want it to go fast. So maybe I would take it now and ask my nurse who has my healthcare power of attorney to terminate it once I have to go to a facility to live. Just thinking about it out loud.

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1 reply
pb50 | @pb50 | Mar 26 12:45pm
In reply to @SusanEllen66 "@pb50 Hello, I was just checking these “boards” and saw these posts. Almost 3 years ago..." + (show)
@SusanEllen66

@pb50
Hello, I was just checking these “boards” and saw these posts.

Almost 3 years ago I made a comment to my PCP about something not being right in my thinking, mental acuity etc. He sent me to a Neurologist who did a few tests; MRI, EEG, Neuropsychiatric Test.
The diagnosis was Mild Cognitive Impairment.

If you read my other post from tonight, you will see that I now have progressed to Alzheimer’s Dementia.

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So that was 3 years ago ? Did you have the ATN test then or later - the one that shows tau181? Boy if I thought I could have 3 years and still sound as together as you do, that would exceed my expectations.

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1 reply
misspatty | @misspatty | Mar 26 2:04pm
In reply to @pb50 "One more thing… ask your doc how long the drug is expected to delay the worst..." + (show)
@pb50

One more thing… ask your doc how long the drug is expected to delay the worst of Alzheimer’s. I don’t know that I want to make it last longer - depending on which period of time we’re talking about. And by how much? With the side effects they describe, I might not want to take that risk for an expectation of only a six month delay. And once I’m in the period I can’t live by myself, I want it to go fast. So maybe I would take it now and ask my nurse who has my healthcare power of attorney to terminate it once I have to go to a facility to live. Just thinking about it out loud.

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My thoughts exactly. If the side effects make life worse for me and my family then I'm not sure I will do the infusions. Yes. This would be my question, too. How effective? How much extra time? I pray that the doctors will see all of us as people and not pressure us to go on meds or other treatments just to add to the research pool. I am determined to deal with this in a way that doesn't make things harder for my family and friends. A good point I had not thought about - to let my daughter know to stop the infusions when I get to a memory care facility. If my PET scan on Thursday does not confirm the Alzheimer's diagnosis, then they say I can have a spinal tap that will give me an accurate confirmation. I guess I do just want to know, one way or the other. I appreciate your comments. God bless. Patty

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1 reply
misspatty | @misspatty | Mar 26 2:16pm
In reply to @pb50 "And you my friend. By the way I’m in the Greensboro NC area. Pam" + (show)
@pb50

And you my friend. By the way I’m in the Greensboro NC area.
Pam

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I am Texan born and raised, but moved to Colorado 15 years ago to be near our kids and grandkids.

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pb50 | @pb50 | Mar 26 3:20pm
In reply to @misspatty "My thoughts exactly. If the side effects make life worse for me and my family then..." + (show)
@misspatty

My thoughts exactly. If the side effects make life worse for me and my family then I'm not sure I will do the infusions. Yes. This would be my question, too. How effective? How much extra time? I pray that the doctors will see all of us as people and not pressure us to go on meds or other treatments just to add to the research pool. I am determined to deal with this in a way that doesn't make things harder for my family and friends. A good point I had not thought about - to let my daughter know to stop the infusions when I get to a memory care facility. If my PET scan on Thursday does not confirm the Alzheimer's diagnosis, then they say I can have a spinal tap that will give me an accurate confirmation. I guess I do just want to know, one way or the other. I appreciate your comments. God bless. Patty

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Have you completed the legal
Process to give her healthcare power of attorney?

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misspatty | @misspatty | Mar 26 3:47pm

Yes, I have. Thanks for checking.
Fortunately, my daughter lives here in Parker and is really involved in all my health decisions.

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pb50 | @pb50 | Mar 26 6:58pm

I know my HCPOA will be objective and none of my three children will have to feel the burden of advocating for this or that. She will guide them to accepting the right decision.

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SusanEllen66 | @SusanEllen66 | Mar 26 7:13pm
In reply to @pb50 "So that was 3 years ago ? Did you have the ATN test then or later..." + (show)
@pb50

So that was 3 years ago ? Did you have the ATN test then or later - the one that shows tau181? Boy if I thought I could have 3 years and still sound as together as you do, that would exceed my expectations.

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@pb50 I have no idea what that test is…

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pb50 | @pb50 | Mar 26 7:23pm

It’s a genetic test to serve as somewhat of an indicator of Alzheimer’s my neurologist ordered them.

I have both APOE 3 and 4

From Mayo:
Most common late-onset Alzheimer's gene
The most common type of Alzheimer's disease usually begins after age 65, called late-onset Alzheimer's disease. The most common gene linked to late-onset Alzheimer's disease is a risk gene called apolipoprotein E (APOE).

APOE has three common forms:

APOE e2. This is the least common. It reduces the risk of Alzheimer's.
APOE e4. This gene is a little more common. It increases the risk of Alzheimer's. And it's linked to getting a worse form of the disease.
APOE e3. This most common gene doesn't seem to affect the risk of Alzheimer's.

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foundryrat743 | @foundryrat743 | Mar 26 7:31pm

I would ask the neurologist, if there are exercises that I could do, that would help me to recall names, words, and help to sharpen my mental acuity, and could maybe help, in terms of preserving cognitive function. To relieve anxiety over the future, I would ask the neurologist if there is a way I can help myself, so that my cognitive functioning ability remains somewhat viable for as long as possible! Good luck!

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