Need to vent after DH Neurologist appointment

@justbreathe2

I am sorry the appointment didn't bring you more clarity. I understand your frustration.

Dad was seen at a top-notch teaching hospital Memory Center. While I feel dad's neurologist did an appropriate workup and diagnosis, he didn't bring much to the party and after a couple follow-ups, mom and decided we'd had enough. Dad's geri psych was a much more useful member of his care team.

TBH, dad's doctors tended to consider him less further along in the disease progression than I did. Dad tended to showtime in front of doctors. It always amazed me that those working with PWD don't seem attuned to this feature of the disease in which they're experts. I think another cause of this was that dad tended to do better than expected on the quick screening tools like MMSE, MoCA and SLUMS than expected.

I sat in on the last MoCA dad ever took about 6-9 months before he died from aspiration pneumonia. Dad had no problem with serial subtraction despite being unreliably continent, bit recognizing the town in which he owned a business for years and being rocky on his feet. At the end the doctor remarked how well he did and dad bragged about being "off the charts" the entire way down to the valet stand where he toddled off behind my back and got in some random little old lady's car. Off the charts indeed. Dad was also well behaved for this doctor which made him reluctant to prescribe psychoactive meds until I sent him video clips of dad acting out at home.

Dad had a PET scan as part of his workup. His was to differentiate between Alzheimer's and WKS based on the metabolism of glucose in different parts of the brain. It led the doctor to give dad a mixed dementia diagnosis based on the results-- he had features of both. Dad's initial neurologist considered a spinal tap based on the history mom gave to rule out a prion disease but canceled it after talking to me. (dad was initially diagnosed in the hospital after a psychotic episode-- mom had been in denial of dad's issues for almost a decade and reported dad's symptoms as sudden onset while I saw subtle changes over the years)

The results of the PET scan didn't change treatment for us, but I think mom needed to see the test results to get out of denial and take the steps necessary to take charge of their lives. Like many PWD, dad had a ansognosia and could not appreciate the degree to which he was impaired, so being told his diagnosis meant nothing to him except making him angry about not driving.

That said, this was before injectables, so there wasn't much any doctor had to offer beyond meds to dial back dad's anxiety and agitation. If you aren't happy with this practice, I would find my own neurologist-- perhaps at a teaching hospital memory clinic-- and get a second opinion.

HB

I’m on the opposite side here. I love DH’s neurologist because he is not endlessly testing. No PET scan. Fine with me. DH is severely claustrophobic. The idea of getting him through a PET scan terrifies me. No spinal tap. No problem. Neurologist listens to what I report and and adjusts meds based on it in addition to in office testing.

Alzheimers is progressive. DH is on the currently available meds. It’s not going to get better. DH’s PCP won’t prescribe the meds. So is neurologist for us.

Neurologists are primarily for performing diagnostic tests and rendering a dementia diagnosis. My neurologist referred me back to my PCP after diagnosis, but my PCP refused to prescribe my meds, so my neurologist kindly allows me to continue to see him for medications. After a few years, further testing revealed that I do not have Alzheimer's Disease.

Iris

This is so sad, frustrating, and painful to read. In 1.5 years my mom has now seen by 4 neurologists - the first from teaching hospital did no follow-up with me, even when MRI suggested possible NPH, and was never informative or responsive (by the time they called I had googled everything they told me); others at a large university hospital agreed on one part of her dx but didn’t have much else to offer. Even the neurosurgeon wasn’t that helpful.

But trust me @justbreathe2 your advocacy matters. Keep pushing, and you will find someone useful. My mom’s primary care doctor became super helpful, but only AFTER I burst into tears in her office because no one - including neurologist at the time - was taking her condition seriously. Since her diagnosis of NPH + dementia unspecified, no one has much to offer. She has an upcoming appointment at a renowned memory center if she’ll go, but my expectations are low. Her memory care doctor is good - knows her issues, is responsive and is helping to figure out meds for anxiety, sundowning and hallucinations.

But overall, the medical establishment has left me so disappointed. I am still glad I pushed. I learned so much. I hope the wine helps. This is a marathon, not a sprint. I’m glad you are educating yourself now.

Jb,,just curious about what you think you will gain from the PET scan? Sadly i think the neurologist is probably correct here, although i am not supportive of the way you were treated. I do not see how the results would change treatment.

I think part of everyone's frustration here remains the hopeless nature of this disease. Unfortunately that's still the case for a lot of neurologic diseases. I never took my partner to a neurologist, but we were blessed with an excellent internist.

I'm sorry it's so hard and frustrating.

JB i agree completely that the way you were treated over the years is despicable. After a tough medical year myself (being a very sick patient and not the doc) i very much realize how broken the system is. But frankly, most of the problems i lay at the feet of the practitioners. They could do better, but I honestly think they are overwhelmed by the system also. They are burdened with seeing too many patients in the pursuit of profit, and communication failures and compassion fatigue are the result. I know enough to know when to be the squeaky wheel and have enough friends still very active in the medical community that when i wasn't happy with the answers i was getting, i had clear alternatives and I know I was given priority because of the jnitials behind my name. It infuriates me that you have to fight to get what you need out of our medical system. It is not the "best in the world," by any stretch, as the politicians like to claim.

I think you are right that you are grieving, and i think it's pretty clear that you should continue your search for a compassionate doc who can help you both. But i don't think any additional imaging procedure will change anything for you, sadly.

There is a new anti amyloid drug from Lilly slated to get FDA approval this year. Some hope.

I have found our neurologist cold and unhelpful. We established with her nearly 5 years ago and when we moved away, we thought we'd keep her, as we still go down to the bay area to see family. We don't have a diagnosis other than MCI complicated by anxiety and caregiver stress. Our last visit, she essentially fired my DW as a patient, even after we told her that we're seeing a clear progression. She was, "Just doing this for our benefit. It's too hard for you to drive down here to see me." I was so damn shocked and then pissed, I just said fine and we're in the process of trying to find a new neurologist. Exactly what I needed to have to do in the middle of all this. What a jerk.

The big thing that concerned me was using the teeny tiny bathroom! I would not go on a long flight. Probably 2 hours max.

Another concern was change of surroundings. That always takes a toll.

FWIW--if you have access to sites that review docs and have the energy to write a review, do so. Be frank. Most practices have administrative people watching these reviews now, just like businesses do. I don't advocate medical practices being run like other businesses, but that's the current reality.

@ButterflyWings "He suffered needlessly more than once as a result of this major blind spot in the health system, where some medics are dismissive and even antagonistic toward family, spouses, (and perhaps wives? in particular). " You might be onto something there. My wife (an RN) used to tell me that many doctors treat men and women differently. I think that is still the case in many instances.