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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?
Purposely answering this before I read other answers. I am not expert, but what difference does it make? Its not like if he really has dementia there are things you can do about it . My dad had ALZ and it appears my mom is losing her cognitive ability. Makes me wonder what will happen to me I have read things where they can do tests to determine if you will get this. Why would I want to know?
Llamalover, How 'bout this; "They do nutty things,".....Let's substitute nutty with unusual things because of having brain disease. "Ask crazy questions".......Let's substitute crazy with continual questions that have no meaning to us, another characteristic of brain disease.
Golly, maybe (with no undue respect to those suffering), looking at the "lighter" side of this awful disease might be what some of us need to cope. Laughter is better than tears.
Hopefully, Rosemary is keeps on going with her positive attitude. I'm sure no disrespect was intended.
Interesting because i seem to be the person having problems today not my caregiver.
I dont have a caregiver yet but am wondering if i'll need one ... soon.
I'll try to not make this too long but have been having some problems that have started to accumulate over the last few months. So i think theyre all stress related since i have an extremely mental stressful job that i dont want to give up because i need the money but if i keep it then driving in winter ice/snow is on the way. What does all that have to do with the mental spaciness i feel ?! And why am i expressing it HERE ?!
well i also dont know if is because i wonder if its all mental ... im 78 and getting to be prime age for alz ... or physical ... uti or low egfr ... which there doesnt seem to be a link with except by accident ive found 3 other times my egfr has been low when ive felt like this.
so im trying to find a neurologist to mri my head to see whats happening up there but now i wonder just how hard it is to find one that wont shrug me off when i go in and say i feel like a space cadet but dont have any specific symptoms that i can state.
Ive changed regular docs twice since the first one would not listen to me and misdiagnosed me 3 times and the new one seems to want me to code my visits and lab tests.
I have a new doc scheduled for may.
I think i want more of what has been stated already ... that there really are docs and specialists out there who can help me.
But the question is, tho, to help me live a good life ... or live forever ... or suddenly become young and healthy again ?
The doctor who knows her the longest is probably the one who would know that something is wrong. A neurologist would be the best one to diagnose and offer treatment options. In our foray through the world of neurologists we've come to the conclusion that not very many of them spend enough time with a patient to even remember their name five minutes later. We kept going until we found one who cared and was willing to spend the time needed, do the tests, see a problem as it was and work to figure things out. It was an expensive process but worth every penny. Since finding this neurologist we've also found a couple more good ones but they do seem rare.
There are nutritional deficiencies, medications and diseases or disorders that can cause someone to behave as if they have dementia. ....even dehydration.
I think perhaps your family doctor is a good witness for cognitive changes, but your neurologist does not see biological changes in the brain on imaging tests.
Most doctors know nothing about nutrition, but they should know about meds that can cause cognitive changes, particularly the neurologist.
If it is a dementia caused by nutritional deficiencies, she would act as if she has cognitive deficits but nothing would show up on brain imaging.
If it is caused by nutritional deficits, it is reversible.
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!!!
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.
I sympathize. When my Mom was found unconscious in the nursing home and rushed to hospital her last week of life I was given differing diagnoses as well.
They did an immediate cat scan of her brain upon her arrival at the emergency. I was told by the attending physician that she was paralyzed on one side. Left, right? He could never get that straight. Her first scan showed nothing except the usual brain changes you would expect with a 92 year old woman. She was scheduled for another one the next day but the attending physician said it wasn't necessary. That she was in her final stages and we should just provide comfort care and let nature take it's course. However, the neurologist told us all that he could determine is that she had a nasty bladder infection, that she never was paralyzed on either side.
So, to make a long story short. I did what I thought was best for her and let them remove all life saving measures. I will never know if I did the right thing or not. It still haunts me to this day. But, I do know she was not happy and was ready to go. So that sustains me.
I agree with whoever said that doctors are not Gods. They are human beings who make mistakes, wrong diagnoses all the time. Go with your gut as I did. In the end, when you are getting two different stories from the doctors that's all you can do.
If I was you, I would get a third option by a MD or a DO. But leaning more with her family Dr and the Geriatric Center. Heres the thing with Dementia & Alzheimer's there is so much not known about the disease. We know it affects the brain. But the disease manifest in people different ways. For example, why do some people show first signs of losing their words and others don't but their first sign is withdrawing from people and lose interest in things. As the disease progresses some will become more talkative while others become close mouth. Heres my point, what may be true for one is not true for another. But here is a few questions to ask yourself, when did the symptoms start? Is your mom on new medications or eating something new? Is she getting enough sleep, water, and eating enough healthy food? Has she fallen? Could she has a small stroke that might have went unnoticed? Most people can have what is called a "mini stroke" and never notice until they go do something that they always have done & can't. Go with what your gut is telling you. You and from the sound of things her Dr knows her best. I think you got some great advice here and as someone stated you haven't said anything about the symptoms. I hope this helps.
You can't really detect the small strokes (TIA) medically after the fact either and they might only last 20 minutes. People with pacemakers can't get MRIs. Vascular dementia tends to plateau while Alzheimer's is progressive.
Somebody said it best on here, if you are questioning them both, then you don't believe what either of them are saying. That was a great statement.
You have a gut instinct, so go with it. Let me be clear, I'm not saying to ignore the doctors advice, just take everything the doctors say with a grain of salt. They can diagnose, evaluate and cure some things, but I think the rest of it is a slippery slope for most doctors and specialists. They can only give you the best possible answer they can come up with at that time.
I have a child with Epilepsy (older now) and for over twenty years I've heard everything under the sun for her diagnosis (types of Epilepsy). The tests they use to diagnose people, in my opinion, doesn't produce reliable results. It's really just a hope and a stab in the dark. These doctors all have their own personal preferences and beliefs and many of the neurologists I have come across during our journey were arrogant. She has had many instances of showing seizures on record, and now recently they are trying to tell me that it is Psychogenic Non-epileptic Seizures (usually caused by a traumatic event). Unless this event happened at school, it didn't happen at all. The doctor made a mistake by not taking her off of ALL of her medication. Recent studies I've read show that seizures will be suppressed if this happens. Her twenty year dr. told us this too. I think rather than the specialist give her this diagnosis, he should have also offered that she just stopped having seizures (because they weren't showing up on their outdated machine). Keeping her on some of her medication invalidated this test in my mind. This specialist had the nerve to tell us to be humble and accept this diagnosis when she's been documented as having seizures for years!! Huh?!!!
This week long study cost 46,000--insurance paid, to determine this result. By the way, this is a girl who was told she would never read and write by the school district. She is now in her second year of college. I stopped believing in doctors and those highly educated people with interesting opinions a long time ago. I still use them, some are better that others, but I don't think they have all or any answers for us at times. Yes, it is hard to determine whether someone has Epilepsy or dementia. My mother was diagnosed sometime this year with dementia. But my gut feeling is that her mental illness is giving off the vibe of dementia. Maybe it is overlapping. But, oh no, the doctor thinks her medication should be working for her so, can't be that. It has been clearly established that the medication for people with mental illnesses doesn't always work all the time.
Over all, I would go with the doctor/neighbor scenario. If they've known her for twenty years, at least they are familiar with your mom. One thing I don't like about doctors--especially neurologists who tend to see people with brain disorders a lot, is that they tend to place people in categories based on studies or observations. We are all individuals and they seem to forget that sometimes. It happened to us over and over again with our daughter.
How many times did I hear this--
"Well, we see in studies that people with brain injury or epilepsy…" Aaaargh!
By the way, "God doctors" "Doctor Mary" I just loved that.
They told me in the absence of all other confirmed diagnoses, they default to epilepsy. None of the specialists work with us long enough to know us. They said my sister would never run and always be awkward. How wrong they were!
I have been on Donepezil now for 28 mos. Yes, there are ugly gastro side effects. I have found by eating 1/4 jar of Planters Dry Roasted Peanuts a day does wonders for eliminating much of the unpleasantness. May not be a correct answer for everybody, I came up with the idea on my own and life is much better with fewer side effects.
My dad is on Donepezil and was experiencing some nausea and loss of appetite. His 15 pound weight loss started to look ominous to his doctor. The doctor prescribed two chocolate milkshakes a day! Not only has he regained his weight but his stomach symptoms got better. I think the milk keeps the stomach coated so he can tolerate all of his medications, including Donepezil. Glad you found what work for you.
I love all the answers. My thoughts, I would believe her Doctor who knows her.
I ran into one of those God Doctors with my ex husband. He has been dizzy off and on for over 55 years. It is caused by allergies. He just doesn't accept it. Our daughter had to work so I took him to a new doctor, a Neurologist, because all of his other doctors couldn't find out why he was dizzy. He always would tell them it was something new, denied it was allergy related, never had it before blab blab blab. So, after about 5 minutes I spoke up and told the doctor what it was. The doctor got very snarky and snippy with me. Said "Well, DOCTOR; what is your name? oh, Mary, Well DOCTOR MARY, what makes you think you know so much." I just explained that the doctor had know my ex for 5 minutes and I had know him for almost 50 years and had been with him during most of his testing. I told daughter not to go back to that jerk.
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.
Bring the test results to Neurologist & then see what he says. Did she have MRI? That’s what my mother’s Neurologist had her take & showed mini strokes caused dementia
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.
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.
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.
She could be in the preclinical stage of alzheimers. A diagnosis cannot be made in this stage because there are no symptoms. Or she could have Mild Cognitive Impairment. MCI could possibly be something other than alzheimers. I would have a conversation with the doctors about your concerns and for clarification.
Get her to a neuropsychiatrist, if possible. I would definitely look at other diseases too, through another doctor of course. It is hard to deal with a doctor who may not like to be told to go back to the drawing board and look for other causes. Like Lyme Disease.
The neuro-pscyhiatrist would look at other possibilities, not sure what though.
I am not sure what her symptoms are, as you do not elaborate, but I am becoming skeptical that Lyme is killing us and we all think it's Dementia.
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.
Be cautious. sometimes known doctors are best, sometimes neurologists. my mother had 2 comprehensive neuro psych evals, this is not the MOCA, which has limits. Her CT was normal, MRI normal, PET normal. There is a scan called amyloid scan which is new the actually looks at amount of amyloid in the brain. Her neurologist who is an alzheimers specialist would not give her the diagnosis till the amyloid scan. there are reasons to be careful and make the correct diagnosis because drugs like namenda only have effects on certain types of dementia. She has the diagnosis or alzheimers but has been remarkably stable on these drugs for a year and a half.
Your point about the value of the most reliable diagnosis for the sake of stabilizing symptoms is spot on. There are three main drugs used to address the symptoms of dementia. Certain ones have been found to work better with certain types of dementia, while others can sometimes be very disruptive. For my father's LBD, only Aricept (Donepezil) is safe for him to take without exacerbating his condition.
A drug may not bring any benefit, or your LO may not be able to tolerate it. They are somewhat notorious for causing gastro symptoms that often make people choose to discontinue them. But, for those for whom they work, they can bring a period of stability, sometimes for a few years. It is well worth knowing what you're dealing with in order to bring your LO the possibility of relief, however temporary.
My dad was quickly helped in his struggle to find words and pronounce them. He was able to resume his crossword puzzle hobby (easier ones), he could follow the news, etc. The point is, his quality of life was improved and that's what matters.
I would rely on the one who did the proper testing.Not just spitting in the wind about symptoms. Dementia changes the brain in physical ways.If a CT scan is done they can see if and where there is damaged or loss of proper circulation or shrinkage. Early on many docs just guess . It's hard to know if sympts are really dementia or something else.Still the changes can be seen on the brain.
Has your mother had a brain scan? It was evident that my mother most likely had Alzheimer’s because of the “spaces” in her brain on the results. My father was diagnosed with Vascular Dementia when the consultant took into consideration his symptoms and behaviour and also the results of a CT scan which showed narrowing if the arteries in his brain. No one could argue with that.
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.
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.
My FIL's neurologist refuses to call it like he sees it: dementia. My FIL is in denial and his neurologist enables him to live in denial. Had he suggested testing when my husband and I raised our concerns to him, perhaps my FIL could have been put on medication that would have slowed down whatever form of dementia he obviously has. Believe the neighbor whose known your mother for 20 years.
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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We all have been through the trenches. No one means any harm. :)
How 'bout this;
"They do nutty things,".....Let's substitute nutty with unusual things because of having brain disease.
"Ask crazy questions".......Let's substitute crazy with continual questions that have no meaning to us, another characteristic of brain disease.
Golly, maybe (with no undue respect to those suffering), looking at the "lighter" side of this awful disease might be what some of us need to cope. Laughter is better than tears.
Hopefully, Rosemary is keeps on going with her positive attitude. I'm sure no disrespect was intended.
I dont have a caregiver yet but am wondering if i'll need one ... soon.
I'll try to not make this too long but have been having some problems that have started to accumulate over the last few months. So i think theyre all stress related since i have an extremely mental stressful job that i dont want to give up because i need the money but if i keep it then driving in winter ice/snow is on the way.
What does all that have to do with the mental spaciness i feel ?! And why am i expressing it HERE ?!
well i also dont know if is because i wonder if its all mental ... im 78 and getting to be prime age for alz ... or physical ... uti or low egfr ... which there doesnt seem to be a link with except by accident ive found 3 other times my egfr has been low when ive felt like this.
so im trying to find a neurologist to mri my head to see whats happening up there but now i wonder just how hard it is to find one that wont shrug me off when i go in and say i feel like a space cadet but dont have any specific symptoms that i can state.
Ive changed regular docs twice since the first one would not listen to me and misdiagnosed me 3 times and the new one seems to want me to code my visits and lab tests.
I have a new doc scheduled for may.
I think i want more of what has been stated already ... that there really are docs and specialists out there who can help me.
But the question is, tho, to help me live a good life ... or live forever ... or suddenly become young and healthy again ?
I think perhaps your family doctor is a good witness for cognitive changes, but your neurologist does not see biological changes in the brain on imaging tests.
Most doctors know nothing about nutrition, but they should know about meds that can cause cognitive changes, particularly the neurologist.
If it is a dementia caused by nutritional deficiencies, she would act as if she has cognitive deficits but nothing would show up on brain imaging.
If it is caused by nutritional deficits, it is reversible.
Here are some helpful links:
https://www.dementia.org/diet-induced-dementia-nutritional-deficiencies
https://www.helpguide.org/harvard/whats-causing-your-memory-loss.htm
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!!!
They did an immediate cat scan of her brain upon her arrival at the emergency. I was told by the attending physician that she was paralyzed on one side. Left, right? He could never get that straight. Her first scan showed nothing except the usual brain changes you would expect with a 92 year old woman. She was scheduled for another one the next day but the attending physician said it wasn't necessary. That she was in her final stages and we should just provide comfort care and let nature take it's course. However, the neurologist told us all that he could determine is that she had a nasty bladder infection, that she never was paralyzed on either side.
So, to make a long story short. I did what I thought was best for her and let them remove all life saving measures. I will never know if I did the right thing or not. It still haunts me to this day. But, I do know she was not happy and was ready to go. So that sustains me.
I agree with whoever said that doctors are not Gods. They are human beings who make mistakes, wrong diagnoses all the time. Go with your gut as I did. In the end, when you are getting two different stories from the doctors that's all you can do.
Good Luck!
But here is a few questions to ask yourself, when did the symptoms start? Is your mom on new medications or eating something new? Is she getting enough sleep, water, and eating enough healthy food? Has she fallen? Could she has a small stroke that might have went unnoticed? Most people can have what is called a "mini stroke" and never notice until they go do something that they always have done & can't.
Go with what your gut is telling you. You and from the sound of things her Dr knows her best.
I think you got some great advice here and as someone stated you haven't said anything about the symptoms. I hope this helps.
Good luck.
Somebody said it best on here, if you are questioning them both, then you don't believe what either of them are saying. That was a great statement.
You have a gut instinct, so go with it. Let me be clear, I'm not saying to ignore the doctors advice, just take everything the doctors say with a grain of salt. They can diagnose, evaluate and cure some things, but I think the rest of it is a slippery slope for most doctors and specialists. They can only give you the best possible answer they can come up with at that time.
I have a child with Epilepsy (older now) and for over twenty years I've heard everything under the sun for her diagnosis (types of Epilepsy). The tests they use to diagnose people, in my opinion, doesn't produce reliable results. It's really just a hope and a stab in the dark. These doctors all have their own personal preferences and beliefs and many of the neurologists I have come across during our journey were arrogant. She has had many instances of showing seizures on record, and now recently they are trying to tell me that it is Psychogenic Non-epileptic Seizures (usually caused by a traumatic event). Unless this event happened at school, it didn't happen at all. The doctor made a mistake by not taking her off of ALL of her medication. Recent studies I've read show that seizures will be suppressed if this happens. Her twenty year dr. told us this too. I think rather than the specialist give her this diagnosis, he should have also offered that she just stopped having seizures (because they weren't showing up on their outdated machine). Keeping her on some of her medication invalidated this test in my mind. This specialist had the nerve to tell us to be humble and accept this diagnosis when she's been documented as having seizures for years!! Huh?!!!
This week long study cost 46,000--insurance paid, to determine this result. By the way, this is a girl who was told she would never read and write by the school district. She is now in her second year of college. I stopped believing in doctors and those highly educated people with interesting opinions a long time ago. I still use them, some are better that others, but I don't think they have all or any answers for us at times. Yes, it is hard to determine whether someone has Epilepsy or dementia. My mother was diagnosed sometime this year with dementia. But my gut feeling is that her mental illness is giving off the vibe of dementia. Maybe it is overlapping. But, oh no, the doctor thinks her medication should be working for her so, can't be that. It has been clearly established that the medication for people with mental illnesses doesn't always work all the time.
Over all, I would go with the doctor/neighbor scenario. If they've known her for twenty years, at least they are familiar with your mom. One thing I don't like about doctors--especially neurologists who tend to see people with brain disorders a lot, is that they tend to place people in categories based on studies or observations. We are all individuals and they seem to forget that sometimes. It happened to us over and over again with our daughter.
How many times did I hear this--
"Well, we see in studies that people with brain injury or epilepsy…" Aaaargh!
By the way, "God doctors" "Doctor Mary" I just loved that.
Best of luck to you, hugs.
I ran into one of those God Doctors with my ex husband. He has been dizzy off and on for over 55 years. It is caused by allergies. He just doesn't accept it. Our daughter had to work so I took him to a new doctor, a Neurologist, because all of his other doctors couldn't find out why he was dizzy. He always would tell them it was something new, denied it was allergy related, never had it before blab blab blab. So, after about 5 minutes I spoke up and told the doctor what it was. The doctor got very snarky and snippy with me. Said "Well, DOCTOR; what is your name? oh, Mary, Well DOCTOR MARY, what makes you think you know so much." I just explained that the doctor had know my ex for 5 minutes and I had know him for almost 50 years and had been with him during most of his testing. I told daughter not to go back to that jerk.
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.
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.
The neuro-pscyhiatrist would look at other possibilities, not sure what though.
I am not sure what her symptoms are, as you do not elaborate, but I am becoming skeptical that Lyme is killing us and we all think it's Dementia.
https://www.nextavenue.org/kris-kristoffersons-dementia-now-believed-caused-lyme-disease/
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.
A drug may not bring any benefit, or your LO may not be able to tolerate it. They are somewhat notorious for causing gastro symptoms that often make people choose to discontinue them. But, for those for whom they work, they can bring a period of stability, sometimes for a few years. It is well worth knowing what you're dealing with in order to bring your LO the possibility of relief, however temporary.
My dad was quickly helped in his struggle to find words and pronounce them. He was able to resume his crossword puzzle hobby (easier ones), he could follow the news, etc. The point is, his quality of life was improved and that's what matters.
My father was diagnosed with Vascular Dementia when the consultant took into consideration his symptoms and behaviour and also the results of a CT scan which showed narrowing if the arteries in his brain.
No one could argue with that.
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.
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.