What do you do when you have conflicting diagnosis about dementia? Doctor of 20 years says yes, neurologist says no?

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My mother’s doctor and neighbor of 20 years has diagnosed early onset dementia. A Geriatric Center did tests and confirmed that diagnosis.
However now her neurologist says it’s not dementia only forgetfulness. Who do you believe?

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There are several kinds of dementia, My father, who has Lewy Body Dementia (LBD), was not definitively diagnosed for seven years from the onset of concerns, and only then by a neurologist doing a full battery of tests to assess and rule out other health problems, obtaining a baseline MRI of the brain, taking a full medical history, and reading my journal of observed behavioral problems.

Each dementia presents with its own early symptoms and progresses at different rates for different individuals. The Alzheimer's website is a good place to start because they provide information on all of the different dementias. Alzheimer's eventually shows up on the brain MRI as dark spots on the white background of the brain matter but that isn't true with the early stage of LBD.

You didn't say what kind of tests were used to confirm the diagnosis. Certainly a cognitive skills test, brain MRI, a full metabolic panel, and a complete pharmacological review of everything she's taking would be the minimum. Forgetfulness or cognitive issues can arise from many causes such as medication side effects, thyroid problems, undiagnosed diabetes, vascular insufficiency, early stage Parkinsonism, sleep apnea, and so on. If you don't feel your mother has been sufficiently evaluated, then it would make sense to seek more information.

It's also true that it can be difficult to be definitive in the early stages. Only the passage of time and a progression in her symptoms will guide you and her doctor. Your mother could remain at her current level for years, or not. It can be a shock to hear the diagnosis being made about your loved one. Denial can be part of the initial reaction. Whomever you decide to work with on your mother's care, it should be someone you trust and feel is responsive to your questions and concerns.

As a suggestion, when I take my dad to see his neurologist about every four months, I create a one page (or less) summary about anything relevant since the last visit to bring the doctor up to date before he even walks in the room. Sometimes you'll want him/her to know some things you might not want to say in front of your mother. I include any medication changes, new diagnoses, any health events or symptoms (UTI, ER visits, episodes of incontinence, dizziness etc.), and I also provide an update on behavioral issues such as agitation, irritability, arguing, word searching, etc. (You'll get an idea of the things to watch for after you read up on the different dementias.) I include at the bottom of my summary any specific questions I want answered so I don't forget to ask. I also attach a copy of the current RX list and a copy of the most recent lab work available. I do all of this because the appointments are infrequent, not long enough to cover all of this, and as your mom progresses it will be difficult to keep her mind from wandering in her answers. I'm able to make the most out of each visit by doing this.

I wish you the best. You are embarking on a tough journey. This forum will be an invaluable resource and support to you.
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Reply to Portmarly
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I'd believe the neighbor who has known her for twenty years and is a doctor, and the Geriatric Center that performed tests. And I'd find a different neurologist.

Surprisingly, and frustratingly, there is no simple test (or complex test) to verify whether someone has dementia or to determine what kind of dementia. This can easily be determined by examining the brain during autopsy, but that is not much good for diagnostic purposes!

If your mom is, indeed, in the early stage of dementia, it will progress. Time will make it more apparent exactly what her impairments are.

Is she currently at risk because of her "forgetfulness"? Does she leave burners on, leave doors open, feed the cat three times one day and not at all the next? Is she well oriented to her surroundings, or does she sometimes forget which is the basement door and which is the broom closet?

The saying goes, "If you don't remember where you put your keys, that is forgetfulness. If you're confused about what keys are for, that is when you should worry!"

If her symptoms aren't putting her at risk, a wait-and-see approach may be adequate. And if they are putting her at risk, you need to act to minimize the risk regardless of the cause.
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My husband (age 63 now) was misdiagnosed with Probable Early Onset Alzheimer's for 6 years. Three months ago, a new neurologist suspected an autoimmune disease and confirmed it was CASPR2 antibody encephalitis using a NMDA blood test panel. This blood test is a recent medical development as we went to the Mayo Clinic in 2015 and thought they did every test possible. This disease is treatable and symptoms can be reversed. He's had two treatments with immunoglobulin so far and recently began feeding himself again. His communication and comprehension have improved as well. The doctors are unsure how much can be reversed since he's had this disease for many years now. We hope and pray he will continue to improve to have a better quality of life. My advice is if it isn't hereditary and you are still suspicious of the diagnosis, request this NMDA blood test panel. My best to you all.
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lynina2 Oct 11, 2018
Thanks so much for sharing this information. There is so much more to learn about the immune system!
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I too have had conflicting diagnoses. I have been seeing my Neuro Dr. for neuromuscular issues for over 14 yrs, and I have every confidence in the world in her as well as my GP. They both agreed, I needed to have an MRI and an evaluation by a Neuro Psychologist.
Previously as a child I was diagnosed with Severe Cognitive Impairment at the age of 3. I provided a copy of that report to all three doctors, which said, I'd never hold a job, live on my own, manage a bank account, or own a house. I had a 38yr career in the travel industry, four kids, own a house and a spectacular partner in my DW.
My Neuro Dr said the MRI showed early evidence of Dementia/Prob early onset ALZ at the age of 56. Neuro Psych said, I should not be left alone, drive, be allowed near a stove, work, and that I scored in the lowest 1% in all categories for men my age. Neuro Dr said, did you give him this report?
My Neuro told me the results from childhood, dovetailed with my test results of 53 years later. We talked about my driving, I told her, only one ticket 20 plus years in the past and no accidents in over 20yrs, not bad for 42yrs of driving. She is very well acquainted with my overall health including several types of neuro testing for neuromuscular problems. Neuro Psych guy just filled in the blanks without looking in to the big picture. Basically, he was punching out a report that only looked at what the results of the cognitive screening were and not accepting that I can clearly do some things, that didnt fit his narrative.
I know I can no longer work. I lost my last job for failure to meet goals and an inability to learn new reservations systems. I agree I was failing in the last two and half years of my career and was relieved to know, yes something is wrong.
I encourage all, finish the walk with the doctors you have confidence in and are looking at the big picture. I am able to volunteer to teach a senior Shut-In who wants to join our faith, volunteer and make contributions to local service groups, fix breakfast and lunch for my daughter and wife as they head off for their work and school days, do banking and share thoughts as a patient on this website.
My job now is to squeeze as much out of each day for as long as I can. I know the next stage is just around the corner and I am not giving up. I still have children in college and elementary school. I want them to know I did as much as I could for as long as I could for all of them. I also have never tried to hide anything and I speak up when I don't understand something, or am confused. To other patients, don't be afraid to admit you are having trouble, and doing the best you can. This also helps our LO's and allows them to have a lighter load.
Take care of all of your legal affairs, ours are all wrapped up and we are starting our third year of having moved all property in to a Living Trust for my DW, Medical Directives, DPOA, a Will for me. We also included a statement in which my DW said she was making no provisions in the Trust for me. That tells the world, we both agreed to the terms of the Trust, and we deliberately made the provisions there-in to protect our family. We had an Elder Law Attorney, look over the Trust and she agreed all paperwork was perfectly drawn up by the Estate Attorney, and we'd do reviews as necessary in the coming years to make sure everything written conforms to any recent changes in State Laws. It's been worth every penny.
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SueC1957 Oct 11, 2018
You've got a great attitude. May God bless you on your journey and give you strength.
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Check the Alz.org website and check out all the stages. See how many symptoms your mom has. It's very hard to tell in stages 1 and 2. But by stage 3, you will see obvious changes that she may try to cover up. It worked with me until I physically saw her and realized her impairment.

I agree with Jeanne, I would trust the doctor/neighbor of 20 years, as he really "knows" her. Also, the Geriatric Center conferred with him. Try another neurologist if you want all three to agree before you're satisfied with the diagnosis.

I'm sorry. It's a long hard road but knowledge is power. The more you know, the more prepared you'll be. Be sure to get some help taking care of her early on (if you will be her caregiver), as you will burn out quickly if you try to do it all yourself.
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Dear Snevetsg,

its taken 8 years for us to begin to isolate Mom’s diagnosis from her ever-evolving symptoms.

She was evaluated by theee geriatricians, her PCP, a neurologist and a Geriatric Psychiatrist.

There have ave been two times when having a diagnosis was helpful - 1) to confirm that what I saw in her behaviors wasn’t my imagination, and 2) to choose the right medications to manage her increasingly difficult behaviors.

It is frustrating to not know the exact diagnosis. But, in looking back, I see that keeping her healthy, safe, and treating her with dignity was more important than knowing her diagnosis. She was showing symptoms long before any medical professional put a label on them.

My my only suggestion might be to ask both doctors to look at the findings, tests, notes of the other physician and politely ask why their diagnoses differ. They should be able to articulate this to you.

Ultimately, if it is dementia, you will know in time. And, if it is another health concern - your vigilant monitoring of her,and communication with her PCP will help you find answers.

Very best of luck to you.
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AnnReid Oct 11, 2018
Wonderful, compassionate response. Exactly what I want for my LO too. Thank you!
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I am another one who would believe the neighbour doctor, and advise you to get a second opinion from another neurologist, or better yet, have her seen by a geriatric psychiatrist. I do believe that a diagnosis can be made on the basis of a number of tests and observations, Mother was diagnosed with vascular dementia and there was no hesitation about that diagnosis. As her disease has progressed, it is following the expected pattern, though there always are individual variations, An autopsy will provide proof (or not) of the diagnosis. This is a difficult time for you. Correct information can be very helpful. Let us know how things are.
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Reply to golden23
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Any diagnostic work needs to be considered in terms of the value to the client.
My LO is capable of conducting a brief, lucid sounding conversation, but is not fully oriented to her surroundings, cannot organize herself to be ready for a predictable event (lunch, church service, hairdresser), has no recollection of an event even shortly after it occurs, and several other observable symptoms.
Because she is in a good support setting, we as caregivers are not quite as concerned about what TYPE of dementia she is living with, and for good or for bad, I’ve had enough personal experience to be aware of the cues that would point to physical identification of treatable syndromes that can cause behaviors that mimic Alzheimer’s / Vascular Dementia.
We now have a strong descriptive one page document from a geriatric psychiatrist, a second single page from the capable physician who is on staff in her AL, and an additional comment from her lawyer.
All 3 of these documents support her need for care.
I would not want her subjected to any testing procedure that did not give me a result that I could use to improve herimmediate circumstances.
I would want to know how the neurologist you’re working with came to the conclusion of “forgetfulness”, which would seem to me to be pretty subjective. So, “forgetfulness” as compared to.......what?
Then, on the other hand, what are the behaviors that are suggesting an “early onset” dementia?
A big “YES” to reading up on “differential diagnosis of dementias”, developing a list of questions to ask specialists dealing with your mom’s symptoms, and getting as specific as you can in terms of treatments that may be recommended.
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Invisible Oct 12, 2018
Really good answer to her question.
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Does it really matter? There's no cure for any stage of Alzheimer's anyway. just get the estate in order and see an eldercare attorney for POA and possible placement in nursing home much later.
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Reply to cetude
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Lol reading these responses are making me chuckle!!! I too, are convinced that doctors aren’t always right.
at age 49 I suddenly developed headaches... no sensitivity to light or sound, just nausea and vomiting. Family doc- bless her heart- sent me for an MRI. Hello brain tumor! (Yes, I’m THAT person who has a headache and finds out I have a brain tumor)
flash firward to neurologist- “I don’t think your headaches are related to the brain tumor... it was an incidental finding.” Ummmm ok....
well I HAD the MRI done because of the headaches, so I wonder what else they “expected” to find by doing an MRI for headaches...if not a tumor!
btw- my very lovely chiropractor said “I can’t see how a brain tumor the size of an egg wouldn’t be the cause of pressure and headaches!” She said “everybody is different, and no one can definitively say that a brain tumor won’t cause a headache”....
before my MRI I pointed to my left front part of my head and said “it’s right THERE! Whatever it is!” And that’s exactly where the tumor is! Go with your gut!!!
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Invisible Oct 12, 2018
I have even more on that subject. Had MRI and EEG after car accident to try to determine cause of blackout. Heart and BP ruled out. Neurologist decided it must be epilepsy, which has lifelong consequences. Took it to Epilepsy Center and they requested EEG results. Found no conclusive evidence of epilepsy. Turned out neurologist never looked at test but outsourced it. Overturned diagnosis but I still had to be on meds for 2 years and report to DMV regularly in order to keep my driver's license. Get your second opinion from an unrelated source and go with your gut.
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