1st visit to Neurologist

NicoleP

Hi, my dad and I are taking my mom to her first appointment with a Neurologist next week. Being that this is our first time and she will not have a clue as to why she is going we wondering what to expect during this 1st visit. What has others 1st visit been like?

GothicGremlin

Hi Nicole - I don't know how it was for others, but for us, the neurologist appointment was the first time we had any real kind of assessment done for my sister, who was later diagnosed with Alzheimer's. We had no clue what was upcoming, and since Alzheimer's doesn't run in our family, it wasn't on our radar.

The neurologist allowed me and my cousin to be in the room (with my sister's consent) for the preliminaries - essentially so that we could be there for support. We were able to ask questions, again with my sister's consent. He asked us questions as well, which I'm sure he used to test how my sister participated and interacted with the three of us.

We left the room, he did the testing, and then he reported that the testing was inconclusive - which was kind of a bummer. We still thought it was helpful because it opened the doors for more testing. He was able to order the MRI, and then later with her doctor, the PET Scan.  Combining all three of those tests are what led us to the diagnosis.

If I'm remembering correctly, I think it took about three months from that first neurologist appointment to when she got the diagnosis. 

I know that some people have anxiety over these appointments, or just refuse to go at all. I don't know how your mom will react, but there might be some anxiety. 

Emily 123

Hi Nicole,

I typed up a little ''here's where we are now' with a brief backstory on my mom and what things I had been noticing in terms of her memory loss, and passed this to the office staff at check in. I included that Mom was aware her memory was 'worse', but that she denied any major issues. 

She's hard of hearing, so I made sure she had her hearing amplifier.

I sat with her as the neuropsychiatrist went over her history and asked some questions about how she felt she was doing currently.  Then the two of them went to do the testing.  I think that took about 1.5 hours, so take something to keep yourself occupied.  Afterwards we all reviewed the results that showed where my mom tested out compared to her age/education demographic group.  The doctor was sensitive to the fact that Mom didn't really want to hear a diagnosis of Alzheimer's, so she had noted it in the results she gave me, but talked to Mom about where she tested well or less well compared to others and things that could help with her memory, as well as giving us materials about AD and contacts for support groups, etc.

I did show her a list of places we were considering for placement, knowing that she couldn't endorse any, but asked if she knew anything about them to where she wouldn't place a family member there, and she told me that she didn't know anything negative about our choices. 

Best wishes!

M1

Nicole, I strongly endorse the suggestion to put your observations in writing for the doc ahead of time, family input is crucial, probably more important than your mother's own input for that matter. Good luck, I hope the appointment is helpful.

M1

Nicole, I strongly endorse the suggestion to put your observations in writing for the doc ahead of time, family input is crucial, probably more important than your mother's own input for that matter. Good luck, I hope the appointment is helpful.

Jerome Likes Pie

Hi NicoleP,

We did the MRI first, which indicated brain shrinkage.  The dementia test took about 3 hours total.  I was able to sit through the first hour with my mother, and the neuropsychologist asked her questions about her history, testing more of her long term memory.  The other 2 hours consisted more of short term memory, organizational skills, and judgment tests, but I wasn't present.  The neuropsychologist spoke with me in private afterwards and provided his diagnosis (Stage 4), but cautioned that only a brain autopsy could reveal the exact diagnosis.  I passed on that.  

The doc provided some materials from nonprofit organizations that help people educate themselves on Alzheimer's and how to get proper care.  He estimated she had about a year until AL/MC was necessary, but mentioned the disease moves at a different pace for everyone. 

Getting my mother to the dementia test was challenging.  She made threats, including suicide, but she finally caved.  Ice cream and other bribes seemed to work!  The doc and I decided not to tell her the diagnosis given her possible depression, etc. so he told her she had sever short term memory loss.  She was pretty much in denial.

The diagnosis helped me start to plan and prepare for the months/years ahead.

I sincerely wish you the best in this journey and hope you are able to get some clarity from the test.

JLPie

Jerome Likes Pie

I completely agree with others' comments on providing a one page summary of your own observations to the neuropsychologist before the test.  We did it a few days before the test.

star26

Jerome Likes Pie wrote: "The neuropsychologist spoke with me in private afterwards and provided his diagnosis (Stage 4), but cautioned that only a brain autopsy could reveal the exact diagnosis.  I passed on that."  

You have a great sense of humor, Pie. I noticed it in one of your other posts too. This is such an unfunny subject matter and situation and it's nice to be able to blow off some steam with a big laugh like this comment gave me...

harshedbuzz

It's hard to say; there is no universal neurology appointment experience.

Our experience as a family was different in some ways and fairly standard in others.

I had noticed differences in dad's personality as early as 2005, followed by significant memory issues in 2008. When I appealed to them both (I was such a noob), they were both incredulous and offended explaining dad's increasingly odd behavior as "a normal part of the aging process". I gave it a rest for a year or so and started back up with my mom whose response was to blow me off for the next 5 years until she nearly died in his care while they were in Florida. She'd developed an autoimmune liver failure- fuzzy-heady, sleepy, fatigued and such. On calls to check on the he told me they were fighting, she needed to see a psychiatrist, go to the ER but never once mentioned she was the color of a school bus. After the hospital called me as an emergency contact, I flew down, assessed the situation and crafted a Plan B which included a neurology evaluation at a university teaching hospital near me.

After they came north for the summer, mom and I went to a family funeral leaving dad with dear friends checking in. He pretty much crashed and mom came home to a blood stain, ransacked house and dad in the midst of a psychotic episode and we put Plan B into play. She put dad in the car, drove 3 hours and met me at the ER of the hospital affiliated with the memory center. He was admitted for 5 days during which they did a CT scan, MRI, bloodwork and daily cognitive testing. In the ER, the resident thought Wernicke-Korsakoff's but the attending professor changed that to "garden variety Alzheimer's". He was discharged to rehab and given a follow up appointment at the memory center.

This is where things got more like everyone else. The structure of the appointment was this- they took dad back for a quick physical and the neurologist spoke to him about his concerns and handed him off to a psychologist who did some cognitive testing while the neurologist took a history from us. They already had quite a record from his hospitalization, so this was mostly history from our perspectives. My mother gave a very sanitized version of the prior 10 years out of a misguided sense of loyalty or inattention. I told the unvarnished truth- the drinking, the dark moods, the confusion and conflated stories, the falls and even the difficulty regulating his body temperature. Then the neurologist reviewed the psychologist's testing and met with the 3 of us to give a tentative diagnosis and a plan for further testing (PET scan) and a follow up in 2 months to give a diagnosis. The cognitive testing and imaging were inconclusive in that he had features of WKS and Alzheimer's so he was given a mixed dementia diagnosis at the second appointment. He declined to offer Alzheimer's medication because dad had some features of FTD-bv. 

Things will look different if your mom is seen in a smaller practice. At the memory center, there was a team of neurologists, psychologists, NPs, MSWs, OTs, PTs and SLPs who specialize in dementia working as a team in one place. 

I concur with all those who said to send the doctor a bulleted list of symptoms/behaviors you are seeing at home and bring a copy to hand them when mom's checked-in. I would also suggest positioning yourself behind your mom and possibly dad, too. This will allow you to communicate non-verbally with the doctor when they talk about what's going on. If they're sanitizing things or reporting utter lies, you can wordlessly shake your head "no". Trust me, the doc will be looking for this. This appointment is also a good chance to ask a professional opinion around IADL issues like driving and managing finances; it is much easier of the PWD and family to have a neurologist take the hit for not driving.

HB

mommyandme (m&m)

star26, 

I was thinking brain biopsy...  lol. 

Jenflex

As it happens, my mom just had her 1st neuro appointment an hour ago.  So I was watching this thread closely, and can now contribute 1st hand.

(I sent a bulleted list beforehand, and I'm glad I did.)

The appointment was with a neurologist my mom has used for years, for her trigeminal neuralgia, so she really likes the doctor. So that was good. On the flip side, Mom was not happy about being pushed to go to the dr...she is grieving the loss of my dad in February after 57 years of marriage, and has been very defensive about her grief being the reason for everything/hers to handle as she sees fit. So she thinks I'm being a meddlesome daughter.

She is not wrong!

Appointment itself consisted of mainly discussion; neuro administered the MMSE test (https://www.ncbi.nlm.nih.gov/projects/gap/cgi-bin/GetPdf.cgi?id=phd001525.1) and asked questions about general health, sleeping, recent falls. (Mom had forgotten the January fall that had her at the ER getting stitches in her forehead...so I was glad I was there to bring that up. Gently.)

Dr. mentioned that I had expressed concerns about Mom's bill paying, and she said, well, my husband always handled that, but I'm doing fine with it.

Treatment plan consists of blood tests for thyroid/B12 levels, and scheduling for more intensive testing.

Tone of the appointment was pretty neutral...Mom and the dr. have good rapport, and I mainly just listened.  Didn't really learn much, but I didn't really expect to.

Hope this helps.