How long does a diagnosis take?

doublejay4me

My husband is having memory issues and his MRI shows brain atrophy. We are working with a neurologist to figure out what's going on, but he still doesn't have a diagnosis after almost a year. How long did it take for your loved ones to get an official diagnosis? He's 51, so we would be looking at early onset alzheimers if that's what it ends up being.

ghphotog

An "official" diagnosis of Alzheimer's for my DW was made after one MRI by the neurologist after reading the MRI report. I also read the report.

The report also showed overall atrophy including the hippocampus.

All he ever said was the MRI was consistent with Alzheimer's and that was that. No other tests ordered.

jfkoc

Diagnosis is a process that begins with the elimination of all things treatable. It then folows a protocol that will help to get a "final" diagnosis.

I think itis still true that a positive diagnos is isnot possible with out an autopsy so you go with the most likely which may very well change as the disease progresses.

MCI is a common start and it may endup being a final diagnosis. My husband was diagnosed with MCI then Parkinson's thenn Lewy Body dementia(LBD)

So you live with what is present learning all that you can to take care of your husband on a day to day basis. There is a lot to learn to make your journey as easy as possible.

You will need to get all financial alnd legal "ducks" in a row while your husband is deemed competent to sign papers. I heartedly recommend a certified elder care attorney to do this work. Expensive? Usually but able to save you a lot in the end.

-J

Dio

As Jfkoc cited, it can be lengthy to eliminate possible treatable causes, especially in the cases of young or early onset "symptoms." If caught early on, the causes such as vascular dementia or heavy metal toxicity can be treated/corrected. It took 1-1/2 yrs before our psychiatrist suspected Lewy Body Dementia. However, LBD can't be confirmed until postmortem via brain autopsy. Learn all you can about the various forms of dementia and caregiving thereof. Get all your legal and health directive affairs in order. Best of luck.

Denise1847

We visited our PCP. He conducted a mini-mental assessment, which my DH performed poorly. The PCP ordered an MRI to rule out other possibilities. After the MRI came back, he told us it was MCI and referred us to a neurologist who performed another mini-mental test and agreed that it was MCI. The neuro asked us if we wanted to go for more assessments and my husband declined. That was that and now the disease has progressed after 5 years to a stage 6.

Taking so long to confirm the diagnosis after the MRI shows atrophy seems unreasonable. Go to another doctor.

Lgb35

we started looking for answers about 3 years ago. DH currently has a diagnosis of MCI. He has had a lot of bloodwork, MRI with atrophy, spinal tap which was borderline for Alzheimer’s. We are also in our 50s. At this point we are getting our legal stuff in order and taking things one day at a time.

JoseyWales

I think the younger you are, the more difficult it is for doctors to give a dementia diagnosis. My DH knew he was having problems in his mid 40s. We saw several different neurologists, neuropsychologists, psychologists, lots of tests (so much bloodwork) and MRIs. It took about 6 years to finally get someone to say "It's probably Alzheimer's". However another neuropsychology test 6 months later, and they were again saying it was the result of depression and anxiety. Maybe some ADD thrown in there for good measure. Honestly, even to this day no one has ever gave DH a real diagnosis. At some point his GP started putting "Presenile dementia" on paperwork.

DH is now 59. He's in memory care, and really should have been moved to the skilled nursing side of the facility 6 months ago. He's wheelchair bound, doesn't make eye contact, doesn't move his arms, doesn't talk.

Keep working for a diagnosis, because there ARE things that aren't dementia that can mimic dementia but are reversable. And in the meantime, get legal stuff done. Because that's just good to do for both of you.

Quilting brings calm

His neurologist may be reluctant to diagnose him with dementia at such a young age. My mom was diagnosed with MCI after a CT and an earlier MRI, blood tests normal for other factors, and a score within range on the MMSE. It’s 3 years later and the neurologist still won’t go further than MCI. Even though I know she’s stage 4 - mild dementia.

GothicGremlin

My sister saw a neurologist in June, 2018. In July she had an MRI and a PET scan. She was diagnosed with FTD and early-onset Alzheimer's in mid-August, 2018.

We began looking for a neurologist in Feb. 2018, and it took until June to get the actual appointment. But once we had that, the other appointments happened fairly quickly.

Peggy's been in memory care now for almost two years.

Ed1937

My wife went for all the tests except for PET, spinal tap. The diagnosis was made when the results came back. But she was in her mid 70s when she was diagnosed. I agree that doctors don't want to give a dementia diagnosis that young.

And I agree with Josey. Get all the tests done in case there is a condition that is something other than dementia. There are many conditions that can be reversed if they are lucky enough to find one.

FAHNJL

DW’s denial and deflection kept us from seeking treatment for about 5 years. Finally agreed to a neuropsych eval in March. Diagnosis was ‘suspected Alzheimer’s.’ Then things started happening relatively quickly. Many blood tests revealed a few treatable deficiencies. Then a PET scan gave another Alzheimer’s diagnosis. Waiting to see if the neurologist orders lumbar puncture to confirm, but I don’t see the point.

ElaineD

My DH will see a Duke neurologist in November (takes that long to get into this special Neurology Group). His PCP ordered a CT Scan of his brain April 2022 once my DH request for a neurology referral. My DH is 83, I am 81 and severely disabled. He has been MY Caretaker for the past 5 years. Alas, I cannot be his caretaker because I'm unable to walk.

The scan showed what I had suspected all along disrupted blood supply to his brain and global volume loss (shrinkage of his brain). DH's family has a very strong family history of vascular dementia. DH has been showing signs of memory loss, reduced executive function, personality change since 2017, at least. He is now unable to remember anything at all along term. He will ask what time his appointment is 3 times in one hour so his short term memory is shaky as well.

This is what the brain scan says:

Confluent and patchy hypoattenuation throughout the subcortical and periventricular white matter which likely represents sequela of chronic small vessel ischemic disease. Global supratentorial volume loss lobar without predominance.

There is no official diagnosis until the neurologist studies the results of the CT brain scan, in November. But I have always been very confident that he has Moderate Stage Vascular Dementia. As a general rule the next Stages, 5-7 progress more rapidly that the earlier stages, but nothing is certain.

But I know for any an unknown diagnosis may reveal very scary conditions, and the age of your loved one many be much younger than my DH. Knowing his family history has made his diagnosis more 'certain'. However, day to day we all live with our and support out loved one, doing the best we can.

We live in Independent Living in a Senior Retirement Community. There is on an-site Home Health Care agency, and Assisted Living and Memory Care are in separate buildings. The staff here is extraordinarily knowledgeable and supportive. Our son, a psychiatrist, lives nearby and understands the challenges ahead.

I am very sad, a grieving the loss of the one person who has known me for 63 years. We just celebrated our 61 wedding anniversary. In so many ways he is already 'gone', for example he doesn't remember our trips to Italy, Germany and Ireland, trips we took in the past 10 years.

This forum is a lifeline for me.

Elaine

mrsbabe2012

My husband had to ultimately have a spinal tap to confirm Tau protein levels found in Alzheimers. And that was after he had a EKG.