Neurologist follow up

Anonymousjpl123

Hi everyone me again. Happy 4th to all celebrating.

My mom has a neurologist follow up appt next week. She has a primary care physician who is now aware of memory issues; endocrinologist aware of memory issues; and the neurologist is seeing her for 2nd time (first time was about 11 months ago and she’s deteriorated quite a bit since then; uti and b12 are fine).

I wish I trusted doctors more, but in the last year many have met me down. How can I make the most of this visit?

short note for neurologist?

call office beforehand?

What questions should I ask?

She does have an mri that needs to be interpreted. I am not sure how she gets diagnosed, or what it can help with.

I have found navigating her health care to be one of the worst parts of this experience.

you all usually come through with good advice. She is in a good facility, is safe, relatively happy (with some very down days), but deteriorating. Thank you!

jfkoc

There are several online sites which explain the correct protocol fo diagnosis. Please read and then make certain all steps were followed.

A list of all new and/or concerning behaviors needs to be given to the Dr before he comes into the exam room and have pencil and pad with questions and notes.

Smilescountry

For me, getting the official diagnosis was not easy. I found that the primary care physician and the neurologist were communicating better with each other than the neurologist was with us. The neurologist sent the diagnosis directly to the doctor, and the PCP told us once when Dad went in for an appointment. At that point, I immediately got online patient portals for all Dad’s physicians so that I could read the summaries and notes after each visit. The notes are especially helpful. I now send a message to the doctor’s office before each visit of any questions or concerns to discuss at the next appointment, and I have found the doctors to be very responsive to that. I can usually talk to a nurse at any time between visits, but for most things, I get more accurate information sending a written message. Also, I quickly learned that the neurologist is very careful not to say anything in the office to upset Dad, so he tends to talk in “code.” However, it is all very clear in the notes. For me, this seems to be a good way to get good information.

M1

Anonymous I would keep your expectations low about this visit. You already know she's progressed. Sounds like the one concrete piece of information you dont have is the mri report, but other than that they may not have much to say. Hope it's helpful.

Anonymousjpl123

Thank you all for your helpful tips.

I do have access to the online portal, which does help. I can see some notes and not others, probably because some are in one hospital system and a few are not.

I guess I am hoping for a definitive diagnosis, a direction. I’m trying to be open and let doctors do their jobs. There are such vague things that frustrate me, even in written correspondence.

For example, in response to my request for a follow up to discuss mri results, the covering neurologist (main one was out) wrote:

“b12 looks fine to me. MRI shows evidence of brain volume which can be seen with age but is more than expected for just age. This could be reason for memory issue.” Geez.

at least we have the mri, and we know the decline is in progress. I need to let them do their jobs and stop wishing they would give me something definitive.

M1

There's frankly just not much they have to offer. It is frustrating to all involved.

Anonymousjpl123

Thank you, M1, for understanding that. I’ll post if I learn anything new. Maybe things will go better than I think. Maybe it will just help knowing she is getting the best care I can summon up. It really does help to have knowledgeable people share honest feedback. It’s a gift, really, so thank you.

Anonymousjpl123

Jesus. Now she has gotten herself worked up. She says I made the appt and she doesn’t want to go. God. After all of this she may not even agree to go.

Quilting brings calm

https://alzconnected.org/discussion/comment/176802#Comment_176802

That’s what ended up happening with my step-dad. He refused to go to the neurologist appointment. Kept refusing. So I called and rescheduled it - will take 4 months to get in again. I told the receptionist that he was refusing to come and she wasn’t surprised at all. This neurologist specializes in dementia.

Anonymousjpl123

I am so sorry your stepdad is doing the same thing. It is so frustrating. I know we shouldn’t be mad, or blame them, but it gets hard for me not to be annoyed.

I am crossing my fingers that she’ll go. This is not a place that specializes in memory care but it will be her second appt so I’m sure they will see the change.

At this point she has agreed again to go. In exchange, I have to take the full day off to be with her, buy her lunch, and take her to maybe get a cat this weekend.

Anonymousjpl123

Hey everyone just giving an update, in case this becomes helpful to someone else. Got my mom to the neurologist and I am so glad I did!

A few things were challenging (she was mad and scared; would not let me go in with her).

that said, before we left she asked me to ask for a visit summary print out. I couldn’t believe it. When we left, she was honest and said she didn’t understand what they did with her, who she met with, etc. i said that I often feel that way with doctors when I am struggling with something.

We read it together. Long story short, they are really leaning toward NPH. I’m annoyed because apparently this was suspected in the MRI, but the doctor said she needed us to call the lab for the digital image. That seems ridiculous to me. But whatever I will do it. Reading the lab notes, they mention NPH too.

Im doing all the follow up with the current neurologist, and getting my mom an appt with a different one (I live in a hospital rich city).

Most importantly, we sat and talked about why I am doing all of this and it somehow clicked to her (for today) that I am 100% doing this for her. What I think got her excited when I mentioned NPH is that there is the possibility of treatment. I also explained that I am not a doctor and there’s no way to know if that’s what it is, but it would make so much sense.

Her walking is impaired, memory issues, incontinence. Those are her 3 main symptoms. And the radiologist who initially uploaded notes from the MRI specially mentioned NPH.

As crappy as this doctors bedside manner is, we are getting somewhere.

next step? Somehow get MRI imaging to neurologist, get appt with 2nd neurologist.

mostly; my mom seems to be ok with it. Up until this morning she was livid at me, I think she was scared I was trying to push something on her. And I think she was just scared.

We talked about it. She knows she has memory issues. I told her it may not be this, we don’t know, but at least let’s get it checked and maybe something can be done. For today, she understood this clearly. I know there will be good and bad days. But I’m posting this for anyone in the hell that is our health care system who feels like giving up. I did, this morning, and feel less like that now.

thank you everyone here @M1 @Quilting brings calm @harshedbuzz @jfkoc @SMiles thank you.