Bad Doctor Experiences?

BugziePal88 · May 24

I’m sure, given our ages (my LO is 37, turning 38 in July), I probably have more than my fair share of these kinds of stories—and they are awful. I wouldn’t wish them on anyone.

That said… misery sure does love company.

We finally got in to see a neurologist—an appointment that was originally scheduled for January but I managed to grab a cancellation. And what did we get out of it? Migraine treatment. Not dementia evaluation. Just… migraines. If the meds help, I'm going to be grateful because my husbands migraines are no joke. But I didn't build a medical file that fills up a binder because of his migraines. Problematic, yes. Can be discussed without a binder and a timeline.

Can we start a thread to vent about all the incredibly frustrating things doctors have done when it comes to your PWD? Dismissiveness, delays, misdiagnosis, being brushed off—whatever it is. Let’s compare horror stories. I need to know I’m not the only one yelling silently into the void.

trottingalong · May 24

Ugh, that sounds very frustrating. I know the time I have been here many have commented about frustrations with the medical community. Many are frustrated with neurologists. I hope the meds help, but I’m skeptical from what you have said.

LJC43 · May 25

JJ401 · May 25

DH sees a neurologist, who after reading some of the stories here, I have decided is a unicorn. He listens. He’s responsive.

A friend started with a Neuropsychologist. That might be a better option for someone as young as your LO.

janeedee · May 25

I too, am frustrated with the medical community and have relayed this to them, to a point. I also realize I do not want to alienate them, because I will need them to value my opinion as to DH.

Started with the PCP, referral to neurologist, then MRI, blood tests and cognitive testing. Neurologist would not consider a diagnosis until all that was completed, which took about a year, due to appointments scheduled so far out. I think all Drs start with an MCI diagnosis - no matter what’s going on - they think that’s a safe call. I said there is nothing MILD about this.

My DH can “showtime” for the 20 min neurologist appointments. He actually tries to “study” for the MMSE. I am also frustrated by some support staff that seem to want to help with the test, give him hints. How do you get an accurate test score if they are giving him hints. That serves no one.

I provide a list in the portal before each appt as to DH’s difficulties at home. I did this thinking it would assist Dr with staging. I had to stop myself from focusing on staging - does it really matter ?

Last visit with my PCP (same PCP as DH) I finally had the guts to say I am having a really hard time with this. Response: “It must be difficult”. That’s it! I repeated that out loud on my car ride home and just had to bust out laughing. So much for all the questionnaires on mental health.

The attached is from a recent zoom webinar - over 67% of the surveyed PCPs are worried about making an inaccurate diagnosis- but that worry hinders them from making an accurate diagnosis- in my opinion.

BugziePal88 · May 25

https://alzconnected.org/discussion/comment/244042#Comment_244042

Ok, but " I am also frustrated by some support staff that seem to want to help with the test, give him hints." There was no support staff, but his neurologist after he said apple (WHY is it always apple? This is absurd. change it up. seriously. The first one he did was "apple pen shoe" like… you DO realize that there's a MAJOR tech brand that has an APPLE PENcil? Outdated. Do better!) and then he didn't know the other two was like "Take a moment. Think about it. Try hard. At which point hubby said "table" which was the word, then said "I really don't know the third" and the neurologist actually said "it's a coin." Like… that limits it to four possible words. How is that telling you anything? After the neurologist said it was a coin, hubby said penny and the neurologist was like "no problems here." SERIOUSLY. like what??

H1235 · May 25

Boy do I have some stories to tell! My dads dr ordered a heart monitor for him, he was completely oblivious to the fact that he had a pace maker. He had been his doctor for many years. I brought it to his attention and he canceled the order. Before mom was diagnosed with dementia she struggled with hoarding (still does). I brought it up with the doctor because it was becoming a big problem. Mom denies hoarding (most do) and I was going out on a limb to bring it up. She was so insulted and angry (a week or more of not speaking to me). The doctor blew me off and told me everyone is comfortable with different levels of cleanliness. Never asked for any details about her hoarding. I’ve since read that this is often a precursor to dementia (we were there because she thought she had a problem with her memory). It took her an hour and a half to fill out a questionnaire they said should take 20 minutes. But the doctor didn’t think that was relevant. Mom complains of being tired all the time so they take her off a medication that can cause drowsiness, one year later she complains of having trouble because she is not on the medication she needs(she is also still tired) (she and the doctor forgot she was ever on the medication). Six months later the whole process is repeated with a difference medication. Mom believes the doctors know everything. She angrily and sarcastically calls me doctor. You are definitely not alone. I know there are some great doctors out there.

janeedee · May 25

https://alzconnected.org/discussion/comment/244043#Comment_244043

that is EXACTLY what support staff did - one is a fruit, the next is a piece of furniture and the last is a coin. I want to scream while they do this. I just want an accurate score as to where we stand. Driving is also based on that score.

jehjeh · May 25

I understand your frustration with these cognitive tests. I found my DH chart notes this week. With help, he used to get 2 or 3 of the 5 words correct (or close). The past 2 times he didn’t even remember they had given him words to remember. His chart indicated this was “critical”.

Has anyone told us/me.? No.

Has his diagnosis of MCI changed? No.

So what is the point of causing him the anxiety of feeling like he failed if there’s no point to it?

I’m sending a message to his PCP today. Next appointment is more than a month out. Same with neurologist. I think I’ll contact him too, just to ask what we can expect from the 1st visit. Maybe I’ll get a response?

Arrowhead · May 26

I'm happy to report that not all doctors are like that. Our PCP was concerned enough to make our appointment with the neurologist. It did not take long. The neurologist was competent, no helping with the MMSE; he sent her to a neuropsychologist and a speech pathologist while also doing a myriad of testing before making his diagnosis. We kept going to him until he mentioned that he had done all that he could and that further visits would not be helpful. I'm sorry that so many have not had such good experiences.

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