6 month wait for a neurologist?

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.

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!

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.

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.

You might find what you need with a geriatric psychiatrist.

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.

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.

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

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.