New diagnosis

E-1

Hi all, my DW was recently diagnosed with Alzheimer’s at 68 y.o. We are both in disbelief due to the way this has been handled. The APRN who has been the contact for this has only been out of school for 2 years.
Yes, she had a PET scan showing the presence of amyloid plaques. No Tau tangles. Some slight decline such as misplacing her glasses or searching for a correct word. Honestly she doesn’t seem a lot different from when we were 19 y.o.kids.
She has not had a full neuro-psych eval. The APRN stated that it was helpful but not necessary for the diagnosis which has already been documented.
The APRN seems fixed on the diagnosis. However, we have both read the presence of the plaques alone does not definitively indicate Alzheimer’s.

It seems like they are in a rush to get her on infusions without even discussing the side effects and the fact that she has co-morbidities.

I’m wondering if anyone else has had this kind of experience and have you sought a second opinion to confirm the diagnosis?

What were the tests that showed definitively that the diagnosis was correct?

Thanks, in advance.

terei

If you are not comfortable with the current health care provider, yes, I would see another doctor

tboard

My DH and I have has sone bad experiences with medical professionals. Medicine has changed. It is provider centered not patient centered. You have to have a pretty good idea of what is wrong and then go ask a doctor for treatment rather than having the doctor diagnose or in many cases misdiagnose. My DH has had two unnecessary procedures and my last visit to a doctor almost cost me my liver.

If you have any idea at all of what might be wrong with your spouse let a doctor know and maybe they can verify. We have also learned to avoid specialists, particularly Urologists because if you visit a urologist you will become a patient and they like to perform surgeries. In other words a specialist may only see their specialty and not look at the big picture.

I feel fortunate in that we finally found a good doctor and it has made a world of difference. As for me it is unlikely that I will every visit a doctor unless I have some type of injury.

TrumpetSwan

I personally think it is good to question. Getting a second opinion from a different provider may also make you feel more secure with things. If you are uncomfortable about who is driving the process and how things have been handled, it might be worth just tapping the brakes to think about the next steps that feel right to you.

If you feel they are rushing you to a treatment course, to me, that might be a red flag. Sometimes, honestly, I feel like they are pushing me along to the next box on their flowchart without even looking at any larger picture.

As far as I know, this disease is not something that requires urgent and immediate application of treatment, so we have the option to take time to apply reasoning that makes sense to us. It does not have to make sense to them, but it has to make sense to us.

Michele P

https://alzconnected.org/discussion/75111/new-diagnosis

The presence of amyloid plaque does not always mean the presence of Alzheimer’s. An MRI, PET scan, blood test for Alzheimer’s and extensive hours of cognitive testing is necessary for a definitive diagnosis. My husband’s Alzheimer’s blood test showed low levels of plaque. The MRI and PET scan along with hours of cognitive tests ruled out Alzheimer’s. Get a second opinion and every available test to get a diagnosis. I would not go back to this medical provider.

H1235

Welcome. If you don’t feel comfortable, I would look into having cognitive testing done. This will really tell you where she is at. After this testing we received a report that showed moms scores in the following areas- attention, processing speed, language, visual skills, memory learning, memory retrieval and executive functioning. The results took into consideration her age and level of education, then showed the percentile she was in for each. Dementia is about so much more than memory problems. It could be that you are providing some scaffolding without even realizing it. I have attached the staging tool that is used most on this site. Maybe this will help somehow.

DBAT.pdf

SDianeL

Dementia is extremely difficult to diagnose. They rule things out usually. Many times the diagnosis is MCI and they say something like white matter disease. If they are pushing for infusions I would pause and study the side effects before making a decision. The infusions may slow progression by a few months at best. They may improve attention in the meantime. You must weigh that against the side effects which can be severe especially with comorbidities. I would get a second opinion. That will give you time to consider the infusions.

MN Chickadee

I would see a new provider and get a second opinion. At minimum because you need a provider you trust. In our corporate health system there is a trend to have people see physician assistants and nurse practitioners instead of physicians in both primary care and specialties. Hospitals will have large specialty departments at first glance, where you can get in right away, but if you look closer it will be like 12 PAs and one physician. Advanced practitioners are cheaper and basically have less collective power so the employer can get away with more. There is often not oversight by a physician, they are not really assisting a physician, they are simply practicing as though they are a doctor. There is definitely a place for them in health care, and I have seen some wonderful ones, but I do not like how they are currently used. Physicians have years of residency, overseen by a more senior physician, so that when they are done they have "seen it all" so to speak. Many Advanced Practitioners in specialties do not get a rigorous training in my opinion. A PA friend of mine who switched from primary care to dermatology made the switch and was seeing patients in a matter of weeks. It made me wonder how she could possibly be very good at it in the first few years. They are also often scheduled to see way too many patients and are overloaded mentally. This may be why it feels rushed to you. I would seek a second opinion so that one you feel comfortable the diagnosis is correct, and two you trust the person driving the care plan. If I were to be facing something as life changing as dementia I would want my care to be handled by someone who went to med school, I think that's fair. Most people who actually go through a diagnosis have many hours of cognitive testing, done my a neuro psychologist, that's pretty standard stuff. I would also push for that. At your wife's age it's not the same as saying 90 year old grandma is forgetful but it's not worth the hassle of testing and diagnosis. She's young for it, and getting a clear diagnosis may be important.

harshedbuzz

@E-1

Hi and welcome. I am sorry for your reason to be here but pleased you found this place.

A couple of thoughts—

We did get a second (and third) opinion regarding dad although not intentionally. He was initially diagnosed in the hospital and referred by the attending to the university hospital memory center where he saw a different neurologist. In the ED, the chief resident suggested one working diagnosis (an alcohol-related), the attending (professor) another ("garden variety Alzheimer's) and the memory center ran the available tests and diagnosed mixed dementia (ARD/Alz). Knowing this was useful but it didn't change the outcome in any way.

A second opinion is great but could take some time to arrange. I tried to get mom seen for some symptoms that concerned me and spent over a year on a waiting list. Specific to your situation, your wife could progress to moderate dementia and no longer be a candidate for the infusions.

While it doesn't replace a chance to have your concerns addressed, you could look at reliable reporting regarding these meds and perhaps send your questions via the patient portal.

HB