6 month wait for a neurologist?

jehjeh · January 10

My DH clearly suffers from dementia. Can't do any of the things asked by his doctor's nurse (Draw a clock, remember 5 things, draw a square inside a circle...), sundowning daily. Yesterday he was frantic because he thought an airplane had flown into our building above us and the bldg was going to collapse. He wanted to use a fire escape ladder he bought years ago and climb out the window. Thought we were on the 44th floor (our condo is on the 4th and top floor). Brain scan almost 2 years ago wasn't good but I only learned that months later from a hospitalist. 5 minute conversation explained some of the changes but I have more questions.

I read about others who's loved ones are taking meds that help. His doctor referred him to a neurologist 2 weeks ago and i thought we'd finally get some help. I just reached them today and the First available appointment is 6 months from now.

How did your LO get diagnosed? He's great at showtime and I can't talk in front of him when we see the Dr. I've messaged his PCP and asked for a private conversation.

Anything else I might try?

WIGO23 · January 11

We went through many struggles trying to get a diagnosis and we lived in a large city with an “Alzheimers Institute” at a major university. First neuro diagnosis was completely wrong. Second neurologist asked us to leave because we asked too many questions.

We finally got excellent care at a nationally recognized Memory Care Clinic at Mass General in Boston. They knew what they were doing and did all the appropriate testing with compassion and caring with my DH.

We traveled 1500 miles for this care but it was worth every bit of time and money spent. We are fortunate we had the resources to travel. Unfortunately, our experience is common with neurologists. Many don’t seem qualified to handle dementia diagnosis properly.

I hope you find good care more easily!

Dio · January 11

Our initial wait was 13 months out — yikes! But we got help from his psychiatrist and got in the fast track but was still 4 months out. Sadly, there's a huge shortage of neurologists who specializes in dementia.

[Deleted User] · January 11

The user and all related content has been deleted.

LindaLouise · January 11

Our PCP was/is the only one who would prescribe much needed drugs for my DH. The neurologist at a large hospital near us was useless - didn't want to prescribe anything beyond donepezil, even though I told him we were dealing with delusions. hallucinations, etc. Our PCP put my DH on small doses of seroquel and an anti-anxiety drug which helped dramatically with agitation as well as the delusions. She understood that I wanted to get him on something that would relieve the unbearable fear and anxiety DH was experiencing. The neurologist just didn't seem to understand. It seems that so many of us have had very different experiences with PCPs, neurologists, etc., so good luck getting the right person on your "team" - my advice would be that the doctor most likely to help might be the PCP and NOT the neurologist!

harshedbuzz · January 11

@jehjeh

One of the unintended side effects of the new infusion medications for Alzheimer's is that the wait-lists to be seen by a neurologist have grown longer. As it was explained to me, people are coming out of the woodwork for consults who previously were seen only by their PCPs.

I'd like mom to be seen at some point. I'm noticing some word-finding, confabulation and short-term memory issues in the last year. It's not an emergency but I expect it could be closer to fall before we're seen. I'm in a place where I feel there will be more clarity with the passage of time.

Her PCP did the initially screening late last spring; that was mostly unremarkable except for a positive for Lyme Disease which was treated. She did improve a bit with treatment. The memory center has a list for getting an appointment that's 6-9 months long.

IME, neurology is your go-to for a comprehensive diagnosis. We had dad diagnosed at a university teaching hospital's memory center. But for the behavioral piece, they were pretty useless. We added a geripsych for the sort of symptoms you're seeing. After mom, he was the most important person on dad's team.

HB

Anna2022 · January 11

My DH finally agreed to get some testing done in 2023 (after years of short term memory loss symptoms). Our PCP was not really helpful, despite my private conversations and her interview of DH (consisting of her question to him, "So,, do you think you have memory problems?") .What a cluster. She did do testing to rule out other causes. That was helpful.

Finally, we went to a geripsych, who was also doing research trials. I secured an appointment but we had to wait for a few months to see anyone. I am told this is typical in our area. It was touch-and-go to get DH into the docs office on appointment day - his anosogonsia was in full play that day. We got the MOCA (22 out of 30) done, and then later a PETScan and a traditional MRI (our insurance would not pay for a more specific MRI and we were quoted a super high private pay price for that - in retrospect I wish we had gotten the more specific MRI at that time because DH has refused further testing). The results were not specific but did rule out stroke, tumor, cancer, etc and we walked away with a DX of mild/moderate generalized brain atrophy. DH refused to participate further in the research (which would have provided more testing and infusions), refused traditional alz meds (consistent with his mantra, "there is nothing wrong with me"). The path left us was the "wait and see" path. Its been clear to me that this is most likely Alzheimer's but the docs won't commit.

I am hoping to get one of the new blood tests for Alzheimers during DH's annual physical this month (pTau-217 or PrecivityAD2 or even some APOE testing for genetic information).

My advice? Get an appointment and get any and all information you can. Information will inform you about your future path and maybe inform treatment options, if any.

CindyBum · January 11

It's interesting, because in CA, the neurologists won't do the evaluation for dementia. It's done by a neuropsychologist. They are trained in doing these kinds of assessments. Unfortunately, both neurologist and neuropsychologists have 6months+ wait times to get an appointment.

What the neurologist can do is order the MRI or other brain exams.

jfkoc · January 11

Sorry to agree, the wait time can be very long for neurologists who are especially good with dementia. While you wait please go online and read all you can about the diagnostic process. Ultimately you will be the one who sees that everything is done according to current protocol.

Lilydaisy · January 12

6 month wait for a neurologist?

jehjeh

Jan 10, 2025

My DH clearly suffers from dementia. Can't do any of the things asked by his doctor's nurse (Draw a clock, remember 5 things, draw a square inside a circle...), sundowning daily. Yesterday he was frantic because he thought an airplane had flown into our building above us and the bldg was going to collapse. He wanted to use a fire escape ladder he bought years ago and climb out the window. Thought we were on the 44th floor (our condo is on the 4th and top floor). Brain scan almost 2 years ago wasn't good but I only learned that months later from a hospitalist. 5 minute conversation explained some of the changes but I have more questions.
I read about others who's loved ones are taking meds that help. His doctor referred him to a neurologist 2 weeks ago and i thought we'd finally get some help. I just reached them today and the First available appointment is 6 months from now.
How did your LO get diagnosed? He's great at showtime and I can't talk in front of him when we see the Dr. I've messaged his PCP and asked for a private conversation.
Anything else I might try?

I would suggest making the appointment and asking that you be contacted if there is a cancellation. There aren't enough "good" neurologists IMO with the surging dementia numbers. And I understand that some neurologists don't really do that much in regular visits after diagnosis, although the first two appointments can be important. In the meantime I suggest using the resources of your family doctor to the fullest. If s/he is like ours, I think you will find that s/he can provide support, perhaps "starter" meds and provide advice.

Stan2 · January 12

You might find what you need with a geriatric psychiatrist.

trottingalong · January 12

we were disappointed with the neurologist we saw years ago. I know what he has, it’s obvious over these many years. We live in a Rural area in California without access to anything other than a GP. Thankfully she listens to me, speaks with my DH and has been willing to prescribe or discuss medicines I learn about on this site.

South Dakota Dave · January 13

I have Alzheimer’s. As soon as I thought I might have Alzheimer's we researched it, and soon learned we must insist on getting action ASAP from every medical professional we talked to. We found that our local Dr.’s are of no use, most are downright harmful. For example, we needed a psychologist to administer a neuropsychological evaluation for Alzheimer’s and my Dr. said “we have good one and she’s only 13 months out” so my DW called every psyc the same day and had one close to us and test done within one month. When the main local hospital botched the Lumbar Puncture (needed for Leqembi) we soon ended up going 635 miles to Mayo Hospital in Rochester MN, we were thoroughly impressed, best thing we ever did.

Carl46 · January 13

My wife's PCP ruled out other causes of dementia (uti, stroke, brain tumor, etc.) and diagnosed Alzheimer's. He prescribed Memantine and Donepezil. We have seen neurologists since but derived no benefit from it. The first confirmed the diagnosis and said the meds she was taking was the best therapy available. The second, who was treating her for a chronic headache, did a spinal tap to rule out meningitis. The spinal tap confirmed Alzheimer's, but we already knew that. He tried migraine meds, but they didn't do anything for the headache.

Oddly enough, I have helped her headache by accident. I started giving her turmeric capsules for gastric reflux. The anti-inflammatory properties of turmeric improved her reflux more than prescription meds and, as a bonus, reduced the severity of her headaches, and reduced the pain of her arthritic knee so much that she no longer uses a cane.

Leesee · January 13

My DH saw 2 neurologists, the second scheduled DH to see a neuropsychologist.

The neuropsychologist was better than the 2 neurologists put together! She explained everything and scheduled him for a 4 hr. test. I knew he would not be able to get through a 4 hr. exam, so we split it into 2 two hour appointments.

When the first 2 hours where over, she said she had all she needed and he did not need to return for the second appointment. She provided a very comprehensive report. I cannot tell you how much I appreciated her final report, it gave me a sense of relief just to receive confirmation of what I was seeing. Her report led to the neurologist scheduling an Alzheimer's blood test which showed he was positive.

I no longer feel the need to see a neurologist. I know what he has and we're working with a Geriatric Internist for his meds.

If you can get in to see a neuropsychologist without a neurologist referral, I suggest going that route.

trottingalong · January 13

https://alzconnected.org/discussion/comment/233775#Comment_233775

Thanks for the information about turmeric capsules. I’m suffering from chronic acid reflux and the prescription meds don’t appear to be making much difference

Anna2022 · January 13

https://alzconnected.org/discussion/comment/233809#Comment_233809

Will you tell which blood test confirmed Alzheimer's? I'm interested! Thank you!

Abby627 · January 14

https://alzconnected.org/discussion/comment/233595#Comment_233595

LindaLouise, I couldn’t agree more! My DH’s PA is 100% better than either neurologist we’ve seen. We can’t even see the local neurologist any more. We have to participate in a Zoom appointment! Pffft…..ridiculous!! I’ll stick with the PA. At least he cares.

Leesee · January 14

https://alzconnected.org/discussion/comment/233827#Comment_233827

This is the test that confirmed Alzheimer's. Quest is the only lab providing this test right now. We found a Quest lab at our local Walmart.

The A-beta 42/A-beta 40 ratio is a measure used in AD research to indicate the presence of amyloid beta proteins in the brain. The A-beta 42/A-beta 40 ratio is important because A-beta 42 is known to be likely to clump and form plaques, making it less detectable. A-beta 40 is more soluble and less likely to form plaques. Because of this, a lower ratio of A-beta 42 to A-beta 40 in the brain is associated with a greater risk of developing Alzheimer's disease (AD).

An Abeta 42 / Abeta 40 ratio that is greater than or equal to 0.170 indicates your results are normal. This suggests that you have a lower-than-normal risk of having of AD. If your result is normal and you are experiencing symptoms of mild cognitive impairment (MCI), such as memory loss or difficulty making decisions, it is recommended that you share this information with your doctor about testing for other potential causes.

A value of 0.150 to 0.169 may suggest an intermediate risk of having AD pathology. It is recommended that you share this information with your doctor to discuss potential next steps.

A value of less than 0.150 may suggest a higher-than-normal risk of developing or having of AD and may suggest that follow-up testing (eg, PET, CSF biomarkers) is warranted to support a diagnosis of AD.

Carl46 · January 17

https://alzconnected.org/discussion/comment/233810#Comment_233810

You're welcome. Hope it works for you. BTW DW does best with the capsules and refraining from eating chocolate cake with icing that is mostly butter. She loves it, but it doesn't love her back.

6 month wait for a neurologist?

Welcome!

Comments

6 month wait for a neurologist?

Welcome!

Welcome!

Quick Links

Commonly Used Abbreviations

Community Guidelines

Categories