What to expect from neurologist appt?
This is my first post, altho I’m sure not my last. My 69 yo husband saw a neurologist in Aug 2025 for memory loss. At that visit, Dr ordered complete labs, PET and MRI & prescribed donepezil 10mg & memantine 10mg. The labs have been completed. My husband was dissatisfied with the Dr and after talking with our children, it was decided to find a different neurologist for follow up appt which is scheduled for early Feb. I have read over the lab reports on his patient portal and while they indicate there may be ALZ, I have been very vague in explaining anything to him since I’m not a Dr and don’t want to read anything into them that might be totally erroneous. He hasn’t asked to read them himself.
My question to others is what should I expect from the appt with this new neurologist now that the lab/test results are in? Will he say anything more than this is the diagnosis and now here are the treatment options? I want to learn what all I can do to help my husband navigate this journey and what kinds of resources I should look for in our very rural location. Or maybe those are questions for someone other than the neuro. Please share your experiences. Thank you.
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It’s doubtful they will say anything more than ‘ here’s the diagnosis, you are already on the appropriate medications, come back in six months’. They might give him another 10 minute memory test. The doctors stay in their lane. They aren’t going to tell you how to navigate daily life with this diagnosis. They aren’t going to refer you to a social worker or a case manager. They aren’t going to tell you about resources.
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QBC above gives excellent advice. Read here a lot!! My DW was 7 years from diagnosis to death. Get your legal stuff done. I was very fortunate to have a NP who would respond 7 days a week to messages on the patient portal. She would vary dosages of meds, order refills etc.. There is no cure, drugs to control behavior was the best that were available. Hard words but hard times are coming for you. I'm sorry you have to be here, but this site kept me sane and my DW comparatively happy for 7 years. Good luck! Rick
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Welcome. Sorry you need to be here. We were very fortunate when my mom was diagnosed. The neurologist suggested she stop driving, said she was not safe to live alone and advised we see a lawyer as asap. The office also offered a 1 hour seminar on dementia (it really didn’t amount to much). I think all of this is more help than most find with a neurologist. I have received the best information here on this site. If the neurologist has a patient portal you might try asking specific questions that way. Asking about driving in front of your husband, for example, may not go over well. Many here have said that some insurance will not cover if there is an accident and a dementia diagnosis on record. I would recommend you learn all you can. You tube had some great videos and this site is great. I wouldn’t wait to visit a lawyer. I wouldn’t give him the impression it has anything to do with his condition. Suggest you’re getting older and this is just something that need to be done. At minimum you will want a will, living will, DPOA. Keep in mind your husband can no longer serve as your DPOA or executioner. The number one rule when caring for someone with dementia is never try to reason with them! Using logic to explain something to someone who can’t think logically doesn’t work. This often leads to an argument and that can create anger and resentment. If there is a problem I would consider one of these approaches. If it really doesn’t matter just agree. If possible just do what needs to be done without his input. If he becomes fixated on something, distract with something and change the subject. The last option is to fib (therapeutic fib). In my opinion if a fib can ease a person with dementias anxiety, anger, and stress a fib is well justified. The problem is knowing which of these to use when and even just getting used to this different and uncomfortable way of communicating. I have attached several resources. I hope something here helps.
This is about anosognosia. It makes everything so difficult.staging tool
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@countrywife
Hi and welcome. I am sorry for your reason to be here but pleased you found this place.
It's really hard to say for certain how an appointment will go. There's a protocol that most neurologists will follow— intake, testing, follow-up to report on test results, offer what they consider appropriate medications and follow-up usually in 6 months at first. It's very common for neurologists to offer a preliminary MCI diagnosis which is changed to Alzheimer's or another dementia 6 to 12 months later.
There are often more resources offered at the memory centers affiliated with university research hospitals vs smaller general neurology offices in the community. Bedside manner can make a difference. Dad's main neurologist was not particularly compassionate, but he was at the forefront of developments and had access to the best diagnostic tools. I also find some will address safety issues like driving and managing finances while others consider it a "family matter".
How long has your DH had symptoms? At what stage would you place him based on behavior at home? If it's truly early in the disease and there are markers for Alzheimer's and he would want to try one of the newer infused medications, make sure this office can get him started on them quickly.
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I know there are some here that have gotten some support from their neurologists. I was not among them. On the followup visit the guy was droning on, but no diagnosis. I really needed a diagnosis so I could file for disability, so I pressed him on it. He finally said, "I already told you! Alzheimers," threw an Alzheimer's Association flyer at me and that was all the support. The flyer would have been helpful if I hadn't already found this awesome support board.
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The neurologist we went to gave us the diagnoses and then was useless so we didn't keep going back. After she was diagnoses we talked about it as much as she wanted to which was not much. She wanted to think about it as just a bad memory. I didn't force her to talk or do anything and never said the word Alzheimer's around her again. That was 10 years ago and she has been in memory care for almost two years.
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Our neurologist also did an EEG and a 2 part verbal/written questionaire.That gave him a pretty good idea of where DH was.
Every time we go see him, he will first talk to DH and how he feels he is doing, then he asks me how DH is doing and what changes I have observed. I hate having to say that in front of DH but I believe that the Dr. wants him to hear it so he wont be in such denial. But, I would be surprised if your Dr would offer any kind of therapy.
There are the meds, including the infusion, which can slow down the progress, but. still, no cure or reverasal of the disease insight.
Sorry that you find yourself here.
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Thank you all. I’m guessing he’s in the late mild stage but maybe a Dr will say otherwise. The first neuro made a report to dmv which then caused him to have his drivers license suspended. I felt it was too early. I have ridden with him and in our sparsely populated rural area where he’s lived his entire life I think muscle memory helped. Honestly, in my 10 mi drive from our farm to town I may encounter 5 cars. He had an OT in office testing appt and she agreed that while his muscle memory would probably have served him well in our situation, he scored at a risk level too high to consider returning to driving. So we’ve already dealt with that. Years ago, we had an attorney draw up revocable trusts, POAs, etc. I’ve reached out to her and she said we are all set except when he’s unable to sign for himself, there will be one document for a Dr to sign off on. I’ve read that some have sought out speech therapists to help their LO. I’m unsure if that’s something which would benefit him in the long run. I’ll start another post asking more questions. I appreciate the support I find here. I wish there was more. It feels like such a lonely diagnosis at this point.
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You’ve received great advice from previous people. I will add that it could be possible that your LO has anosogosia, a condition where your husband truly doesn’t recognize his dementia and limitations. My husband insists he’s going to “get better”. It also results in him getting upset if doctors or I mention ALZ or dementia.
At doctor appointments I give the doctor a written summary of anything they should know. Doctors have been very receptive.
My husband’s care is through VA and has been excellent. We were referred by the neurologist to a special VA geri group to manage his care. The geri neurologist had a social worker call me who provided very helpful info. In our case a pharmacist calls us monthly to discuss his meds, behaviors, etc.
This community has provided invaluable info and support to me as I navigate this terrible journey. I’m sorry you need to be here but glad you found us.
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I appreciate not sugar coating, but it doesn’t cost a dime more to offer compassion. My DH’s NP is very caring & has offered to be there in anyway we need.
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I’ll definitely ask about that. Thank you.
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I am sorry to hear of your experience. It is apparent to me that the first neurologist ordered all necessary test. What is it you hope to get from a 2nd opinion?
I've often sought 2nd opinions when I feel my issues have not been addressed. Are you seeking another doctor because the first one made hubby lose his license? I hope not as the doctor only did what he LEGALLY has to do.
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DH
Yes, I understand the legal responsibilities. This is not a second opinion. DH had only one appt in which the first neuro ordered the labs/tests. There was no follow-up appt made with neuro #1to review the results and provide diagnosis because DH didn’t care for him. It seemed in my DH’s best interest to find a practitioner with whom he is comfortable. So I hope to get a Dx from neuro #2 that’s more than my looking over the lab and test results and making my best guess. I want to know exactly what all those numbers mean and if he’s outside a standard on labs, which are of most concern and how should they be addressed. Thanks for asking.
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Our neurologist would only prescribe donepezil or memantine after a PET scan confirmed diagnosis of ALZ. We were told these drugs could cause more harm if the dementia was caused by something other than ALZ. We had 3 hours of neuro / psych testing confirming dementia. Then we had to wait a few weeks for amyloid PET scan. We were only given the prescriptions after the PET scan. If you had an amyloid PET scan and then were prescribed donepezil / memantine, I would request to read the PET scan summary from the radiologist. If he has a amyloid PET scan confirmed diagnoisis of ALZ, my own opinion is that I would not expect much different from the second neurologist.
Unfortunately, ALZ diagnosis is not a clear, "black or white" process. We were told that combining the results of the neuro / psych testing and the amyloid PET scan, our ALZ diagnosis had an accuracy of greater than 90%.
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If your husband is in the early stages of Alzheimers (and the PET test should give a pretty definitive diagnosis,) he could be eligible for the new infusion drugs that seem to substantially delay symptoms. If he is eligible and you want to consider these, the sooner you do, the better. I was an early skeptic, but the longer term follow up looks pretty promising. Medicare will pay, I believe, if he is eligible. There are side effects. Do a search for Leqembi and/or Kisluna and read what the studies show. Of course it may not be feasible if you aren't near anywhere for the infusions. And there should be information about peoples' experience with these drugs in this forum. Oh and one last thing, the neurologists don't do much….but a sympathetic one is nice to have.
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You have been given lots of support and good counsel. Let me pick up one thread from your original post: “I want to learn what all I can do to help my husband navigate this journey and what kinds of resources I should look for in our very rural location.”
For several years I helped to manage my dad’s situation in a very rural area. The best sources of information about resources I found were these: (1) the Area Agency on Aging in his area, (2) a social worker associated with home health that my dad’s PCP had set him up with, (3) the PCP and the office staff, and (4) aging friends in the area.
You can find the local Area Agency on Aging on the web, using this national locator:
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@countrywife, now I understand. Thanks for clarifying.
It is so sad that in the age of electronic records, doctors seem to have forgotten their obligation to decipher results for their patients.
As I am an RN, I know how to decipher my own results but I still feel a bit annoyed when they order tests then leave me to call to schedule a follow-up to go over results we then both have. I personally liked the good old days when they would call to give me the bad news instead of me stumbling upon the disturbing results.
Case in point: I've been telling my mom's PCP to test her because she was exhibiting signs of cognition decline. He finally tested her & diagnosed her officially in Dec. 2024. However, in scouring all her portals, I saw wherein he had ordered an MRI in 2019 for a different matter but the radiologist saw the beginning of neurodegenerative disease & commented on ot. PCP never told my mom or me. Idk what is the point of ordering tests if they won't call & tell their patients the results.
All the best going fwd.
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welcome. Sorry about your husband’s diagnosis. The Neurologists aren’t much help except for diagnosis and even then there is so much they don’t know about dementia. Dementia is the overarching disease. Alzheimer’s is a variant of dementia. I would not discuss the diagnosis or tests with your husband unless he starts the conversation. It will only cause him anxiety. The infusions for early onset may delay progression by a few months at most and they have significant side effects to consider. The 2 drugs they usually prescribe do not delay progression but may help with focus. I saw no difference for my husband but left him on Memantine because there were no side effects. Your husband may not have liked the original Neurologist because of his cognition. He may not like the next one either so be prepared if that happens. Many with dementia don’t like any doctors. As another posted your husband probably has anosogosia which means he is incapable of understanding he has dementia. Read the book “The 36 Hour Day” and search online for dementia caregiving videos by Tam Cummings or Teepa Snow also Dementia Careblazers is a good resource. This is the place for info and support. Come here often. We understand what you’re going through. You are not alone. 💜
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Thank you for your response. I will look for the book and the videos.
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I will definitely ask about options. Thank you.
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Thank you for your response. He has said his brain just isn’t working like it should & there isn’t anything he can do to change that. But no one says the words dementia or ALZ. He is compliant with meds and eats whatever he is served - I try to keep meals and snacks as healthy as possible. He recognizes his license is suspended and he hasn’t pressed that. Once the OT told him that her testing showed he’s a high safety risk behind the wheel, he hasn’t asked about trying to get his license back. Until then, he was trying to study the manual with the idea that he would try to retest.
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Thank you Aril. I’m interested in what kinds of services AAA and the social worker might have offered, if you don’t mind sharing. At this time, my DH is very capable of most of his ADLs. I’ve handled the finances since we were first married (45 yrs). I do the cooking. He helps with household chores. He’s very capable but doesn’t always enjoy doing the dusting, etc. He takes care of his personal needs, walks the dog around the ranch, will help me with projects if I need a second set of hands, does his own laundry, etc. I think he’s in the mild stage altho he may be good at bluffing his way thru things. I say all of this only because maybe at this stage there isn’t much more for anyone else to do - just me kinda making sure our lives are staying upright so to speak. I dont want to miss anything tho.
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@countrywife I don't much enjoy dusting either. 😁
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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