A diagnosis that isn't a diagnosis

Palmetto Peg

After all the tests, including a (failed) memory test, full cardiac workup,  and MRI, my husband's diagnosis is "Mild Cognitive Impairment with Amnesia".  No stage given, no real information about what that means, or any ideas on progression.  I was told to keep an eye on things, encourage him to do brain teasers, and follow up with a neurologist for him.  DH flat out refuses a neurologist and says he wants no more tests.  The PCP agreed that the amnesia was concerning, but she basically copped out and said let's wait and see.

How can something be mild when it interferes with every day living?  He has to be directed in every activity he does, reminded numerous times of the daily schedule - i.e., doctor visit, dentist, a workout with his trainer, where I will be every minute, etc.  He follows me around and asks the same questions over and over.  Of course, I am relieved that the MRI did not show Alzheimers or Vascular Dementia, but it didn't appear to be of much use in a diagnosis, either.

What is the outlook for this diagnosis?  Online I read that around 60% of individuals with this kind of impairment go on to develop dementia.  What is the difference between MCI with amnesia and without amnesia.  We have seen his PCP and the cardio doctor - should I push for a neurologist or just wait and see?  Any help will be greatly appreciated!  Thank you!!!!

Rescue mom

I personally would recommend seeing a neurologist—one who deals with dementia patients— for better diagnosis. They have more tests on hand that reveal more of what you’re talking about. We love our PCPs (mostly) but from countless reports here, they often fall short on diagnosing dementias. They can’t be expert on everything, and neurologists can do more, and more specific, detailed tests, that can show dementias. 

I think most PCPs fall short because it takes a lot more time, and there’s very little they can do, but that really is just personal opinion. But many many people have said here their PCP did not or could not find the dementia until very late stage, for whatever reason. I had to badger my DHs PCP to get the referral to a memory clinic with neurologists. By that time, DH was midstage, and it was not the joking matter the PCP considered it.

That said, after you get the diagnosis, neurologists don’t have much to add. And in fact, there’s not much they can do. But they can get a better Dx that most PCPs.

And of course you can wait and see. A Dx is needed for some benefits such as early SS payments. A Dx also rules out other medical problems, but your doc has probably already done that ( ??). Otherwise, you will see the behaviors as they develop (as you already are) and a Dx can’t predict, with much detail, what will happen when.

Regardless, this would be a good time—if you have not already done so—to get DPOA and finances lined up so you can watch and handle them. Mishandling money is a very common and early problem.

Crushed

My wife was diagnosed in 2010 with Mild Cognitive Impairment  of the amnesiac type

people with MCI can function in the real world but cannot do complex mental tasks.

There is no clear diagnostic test for Alzheimers.  The cold reality is that 60- 80 % of Amnesiac MCI patients are recognizable as Alzheimer's or another dementia  within 6 years.  

The term MCI describes cognitive impairment in elderly persons that is not sufficiently severe to qualify for a diagnosis of dementia. MCI can present with a variety of symptoms; it is termed amnestic MCI (aMCI) when memory loss is the predominant symptom, and it is frequently a prodromal state of Alzheimer’s disease (AD) (2).  

In 2009 my 57 year old physician wife was appointed to a top position in the government in Medical computing.  She was a certified genius She was retired on disability at 60 and went into memory care at 65.  she is now 69 and can walk and swallow and that is all.  

Joe C.

Peg, Unfortunately test such as MRIs are not capable for diagnosing Alzheimer’s, instead they are given to rule out other causes of impairment such as a brain tumor. I remember DW’s neurologist was very clear on this point before her MRI. I would recommend trying to get your husband to see a neurologist, you really need a specialist for a dementia diagnosis.

M1

PP I like the other posters think the MCI is a cop-out, they don't want to be the messengers that get shot.  Alzheimer's is only definitively diagnosable by biopsy or postmortem exam; but statistically it's the most likely diagnosis because it's the most common (along with vascular a close second).  I was fearful that the imaging and the appointment wouldn't bring the clarity you were hoping for.

Ed1937

I would see a neurologist who sees dementia patients as a large part of his/her business.

Cynbar

I think many of us have experienced the disappointment of not getting more clarity from our doctors. I know I pushed hard for a diagnosis for my DH, but once we got one, there was really no explanation of what to expect or any timeline. Only a couple medications exist for memory loss and their benefits are suspect. As time went on, I realized that every patient and every timeline is different. This forum has been more helpful to me than any doctor in terms of planning ahead and learning what to expect. I do have to remind myself that every symptom doesn't happen to every patient, but the information I've gotten here has helped me navigate as we have moved through the stages. Absolutely make an appointment with a neurologist, they seem more willing to give a diagnosis. And they or a geripsych are better at prescribing meds for different symtoms along the way than a PCP. But unfortunately it is still a matter of flying by the seat of your pants.

Rick4407

Hello Peg, sorry you are here.  My experience is that most physicians will not provide a diagnosis outside of their specialty.   You mention stages, even most neurologists use only 3 general stages, early, middle, and late.  There are a number of stages 1-7 that people reference here and elsewhere, they are really general descriptions of behaviors.  They are an informal reference for us.  You can find them by looking around this site or a google search.  The definite advantage to having a neurologist or geriatric psychiatrist is that they (or their Nurse Practitioner) will be familiar with and prescribe appropriate meds to control behavioral issues that will arise.

In terms of getting your DH to go you will probably have to tell him some things that aren't true.  Getting a referral from your PCP and insuring the PCP has forwarded the various tests he has completed will make the session with a neurologist more productive.   What to tell your DH?  Don't call him a neurologist, refer to him as a "specialist" maybe.  Tell him that the Dr may have meds such as Aricept that can possibly help him.  I would also recommend you referring to your husband as having some confusion or "fogginess" rather than memory loss.  You can say "we've talked about this several times and it was his idea.  It won't hurt to go and see what he can do".  

Acceptance is the hardest part for the caregiver, it is an earthshaking event in a marriage.  Everything will change.  Your role will change as the disease progresses.  As other have said reading here, posting questions, are the best tools you can access at the moment.  There are a number of books as well as U-tube videos that can help.  Accepting is the hard part.  Good luck, keep us posted, and ask questions when you have them.   Rick    

Iris L.

Palmetto Peg wrote:

After all the tests, including a (failed) memory test, full cardiac workup,  and MRI, my husband's diagnosis is "Mild Cognitive Impairment with Amnesia".  No stage given, no real information about what that means, or any ideas on progression.  I was told to keep an eye on things, encourage him to do brain teasers, and follow up with a neurologist for him.  DH flat out refuses a neurologist and says he wants no more tests.  The PCP agreed that the amnesia was concerning, but she basically copped out and said let's wait and see.

The PCP did the right thing, which was to rule out medical conditions that can cause memory loss.  The memory test was a screening test, the purpose of which is to alert the PCP for further investigation.  If they fail the test, as your DH did fail, then the doctor is to refer to a neurologist.  

I hope the full cardiac workup included testing for nutritional deficiencies which are common in older adults, also testing for hormonal problems, such as low thyroid or low testosterone.  As indicated above, the purpose of the MRI is to rule out a tumor or stroke or something like that. Uou cannot see Alzheimer's Disease on an MRI.  Also, there should be a review of prescription and nonprescription  drugs, because many of them have memory loss as a side effect.  

It doesn't appear that the PCP copped out.  I was a physician in my career.  Our practice was to refer the patient directly to a neurologist.  But apparently, this is no longer the practice.  Even in my case, I was just told to find my own neurologist, which I did.  

How can something be mild when it interferes with every day living?  

The definition of MCI is that it does not interfere with daily living.  My impression is that the doctor used MCI as a working diagnosis pending further evaluation and definitive diagnosis from a neurologist.

He has to be directed in every activity he does, reminded numerous times of the daily schedule - i.e., doctor visit, dentist, a workout with his trainer, where I will be every minute, etc.  He follows me around and asks the same questions over and over.  Of course, I am relieved that the MRI did not show Alzheimers or Vascular Dementia, but it didn't appear to be of much use in a diagnosis, either.

What is the outlook for this diagnosis?  

I have bad news for you.  MCI is not even a diagnosis anymore.   A few years ago the DSM V changed to mild neurological disease and advanced neurological disease.  I don't remember the precise terms because I have cognitive impairment myself.  People continue to use the old terms though.

Online I read that around 60% of individuals with this kind of impairment go on to develop dementia.  What is the difference between MCI with amnesia and without amnesia.  We have seen his PCP and the cardio doctor - should I push for a neurologist or just wait and see?  Any help will be greatly appreciated!  Thank you!!!!

The purpose of getting a more precise dementia diagnosis is three-fold.  1)  Some medications that are used  for patients with AD are contraindicated in the other dementias, such as FTD.  It's better to know as early as possible to avoid a medication disaster.

2) Memory medications can be prescribed.  These meds may help the patient in the early stages of Alzheimer's Disease function better and may prolong the early stages.  These meds are not cures.  Also, the patient can start on Best Practices.  From what you have written about the shadowing, your DH appears to be past the early stages.

3) The patient and family need to use this time to make plans and take necessary financial, legal and other steps.  In many cases the PWD (person with dementia) will be limited in being able to plan due to having anosognosia, which is the inability to be aware of having dementia.

Do not wait and see.  Read several threads from other newcomers.  Read the online reading material.  Make preparations now.  Learn from the members.  They know the most.  Follow up with a neurologist who regularly diagnoses the dementias.  The neurologist should be able to tell you more, but it will be better if you go in armed with questions.  Doctors can help only so much.  

Iris L

Iris L.

Iris L. wrote:

  MCI is not even a diagnosis anymore.   A few years ago the DSM V changed to mild neurological disease and advanced neurological disease.  I don't remember the precise terms because I have cognitive impairment myself.  People continue to use the old terms though.

The correct terms are major neurocognitive disorder or minor neurocognitive disorder.

Iris

Crushed

Iris L. wrote:

Iris L. wrote:

  MCI is not even a diagnosis anymore.   A few years ago the DSM V changed to mild neurological disease and advanced neurological disease.  I don't remember the precise terms because I have cognitive impairment myself.  People continue to use the old terms though.

The correct terms are major neurocognitive disorder or minor neurocognitive disorder.

Mild Neurocognitive disorder
The result is that the DSM-5 version of mild NCD, in more ways than not, resembles the widely used international criteria of MCI.

 
Individuals with MCI show a cognitive impairment that is greater than expected for their age and educational level but does not meet the commonly used criteria for dementia. It must also be noted that both MCI and mild NCD refer to cognitive syndromes and not to any specific disease state. 

  
The important issue here is not what it is called but what it is.  Neither is a diagnosis of a disease but instead are a description of a syndrome  i.e. a collection of symptoms

Harv Rev Psychiatry. 2015 Sep; 23(5): 368–376.

 Mild Neurocognitive Disorder: An Old Wine in a New Bottle

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4894762/

Palmetto Peg

Thank you all for your helpful responses.  I think I will wait a few weeks and then get a referral for a neurologist.  By then, DH should have basically forgotten that he didn't want to go.  The MRI information you gave me was very helpful - I thought an MRI could tell us more than it obviously can.  What I am understanding now is that it just rules out other problems.  

I have another question about the behavior of my DH.  At the cardiologist, the doctor mentioned that he had a minor problem with cholesterol and should try to eat more of a plant based diet and cut out some of the higher fat foods.  Ever since then, he keeps repeating that I need to cook only plant based foods and he keeps talking about how he never had high cholesterol before and I need to only cook plant based foods - and on and on and on.  We were watching TV last night and out of the blue he said - you know, the doctor said I have high cholesterol and you need to only cook plant based foods.  This morning he asked me if it was okay to eat yogurt since it isn't plant based! It is like he is stuck on repeat.  Is that common?  How can I make him forget it?  He has done this once or twice before on other subjects, and finally forgets about it, but I would love to be able to redirect him before he gets so upset.

My husband is 75 years old, so this isn't an early onset case, but if he does develop full blown dementia in 5 or 6 years, I would imagine he won't do very well simply because he will be in his 80's.  I definitely need to get a plan in place.  We are good on the POA for both financial and medical, but I will make an appointment with our estate attorney to see what else I should do.  He is on Social Security, so we don't need to apply for disability, and thank goodness we have decent medical coverage.  So much to think about!!  I am so relieved that I found this forum - what a wealth of information from such nice people!!  I hope you all have a good - or at least peaceful - day!

Paris20

Peg, what I am writing is based on my reading and my experience with caring for my DH for I-don’t-know-how-many-years. I am not a physician so my opinions are not meant to be gospel. My first comment is that I agree with all the other posts. Your husband may well be beyond any slight impairment stage. The constant repetition, even about a vegan diet, is one sign. Don’t wait to get that referral to a neurologist. It can take months before you can see a specialist. Meanwhile your husband might start doing things that threaten his safety. A dementia doctor can tell you whether he should drive, for example.

Your PCP has not served you well. She probably doesn’t want to be the bearer of bad news and is kicking the can down the road to a neurologist. After my PCP gave my husband a basic memory test, she made a referral to a neurologist. The only symptoms my husband had at the time were a little short-term-memory loss and the beginnings of repetitive questioning. The neurologist, whom we had to wait several months to see, diagnosed my husband with good-old MCI but warned that 95% of patients with MCI go on to develop dementia.

I won’t describe all my husband’s symptoms that appeared over the years. They’re on this website as well as many other reputable sites. Besides, everyone is different. The bottom line is to stick with the neurologist and what he/she says. Don’t fall for claims of miracle cures because there aren’t any. Do turn to these boards for help and support. You may be in for a long and unpleasant journey.

Rescue mom

Keep reading this forum, even topics that may sound like they don’t apply to you. Comments often go off on tangents that Do apply, and also, while you may not need that tidbit of info today, it might be needed next week. I found far more practical, helpful help with handling dementia  here than from all his doctors combined.

Your DH may forget about his opposition to neurologist, but you may have to use some subterfuge to get him there. I’d advise start now trying to get that appointment. A 3-month wait for first appointment seems pretty common, from what I see here. As someone else said, his behaviors seem to me to be beyond MCI, and can change quickly.

 Sometimes to deal with opposition, you can say “insurance /Medicare has a new requirement we go see this doctor” or maybe “there’s a new program/person who can help us remember things better, why don’t we go”. Don’t say he has a problem, say it like this is something that can help us both improve.

As someone said, don’t call the doc  “neurologist.” Say expert, or specialist, etc.  (We’ve all had to learn to fib sometimes, for the greater good. Truth can be hurtful and cause upset, and that’s painful. If a fib can prevent that, that’s for the best)

Obsessions like the plant-based food are pretty common. Yes, they get stuck on repeat.  The subject often passes fairly quickly. (TV ads can be a terrible trigger) Meanwhile, you can fib with some things, like saying, “this is a new version made for vegetarians”. If it’s a hunk of meat, that’s harder, although some veggie burgers look like the real thing. If you really do want to do that, Trader Joe’s has incredible selections of all kinds of plant-based food, including lots of fake meat.

You mentioned you have good insurance, which is great. Many people are surprised to learn that most insurance does NOT cover what’s often most needed, which is usually extra caregiver help, to give you a break.  You don’t seem to need it now, but most caregivers need help at home sooner than later, and you might keep an ear and eye open for that resource. If you do have long-term care insurance, that’s a huge help.

If your DH handled bills and finances, you may want to double check those and gradually take over. Many stories here about how a LO with dementia lost six figures—or did not pay taxes, or let bills lapse— before anyone realized what was happening. 

Also, re your estate and other planning—if  he is listed as the person who takes over if you are unable, that needs to change. Most couples just list each other automatically, but once one has dementia, that can’t happen. 

Iris L.

Read about anosognosia.  Don't mention dementia or try to get him to admit to having dementia.  If you or he has a bucket list activity, do it now, if you can do it safely, because soon you won't be able to.  

Iris

DrinaJGB

My DH suffered a near fatal brain injury from viral encephalitis over 11 years ago. Since then we have had periodic testing done (ordered by his neurologist) with the diagnosis being "mild dementia, possible mixed etiology." In pondering this I am left wondering for all of these many years is that what it is, or is it amnesia--for which I can get no clear explanation. No one can tell me.

What baffles me is that over 11 years DH has not gotten worse. Yes, he has what I have always thought to be amnesia from the lesions the virus left behind in temporal lobes, limbic area, left high frontal,hippocampus- which cause memory loss/amnesia.He has problems with executive thinking, problem solving, etc.He does not work ( architect with graduate degree from Rice), drive or pay bills.

  The problem recently has been that he rushes through questions asked by his neurologist and does not take time to think about the answer, merely stating quickly "I don;t know", This in turn has now led to having his neurologist state that he is "significantly" worse---and has now ordered another NP testing assessment as well as an MRI.He is nervous in the doctor's office and his anxiety hampers his recall. He does well at home when I do little memory recall tests, and he works on memory books. His language is not hampered. His memory has actually improved over time, but the doctor does not seem to want to hear that .He sees him for 15 minutes once a year and I see him and interact with him daily.

  After 4 months of hospitalizations in 2010, near death code and a coma on life support---he knew nearly nothing the first year. That is what I have for comparison, but the doctor never saw him in that dreadful state.

 I imagine once again we will be left with another mild dementia diagnosis. As far as the MRI- I have no idea what to expect but it will be interesting to compare this one to the one he had in 2011. It looked like a train wreck.

You are pretty much left on your own with many, many unanswered questions. At least that has been my experience for over a decade now.

Marta

As a PCP I can attest that the PCP for Peg’s DH did her job within the scope of her practice.

It is not possible to diagnose dementia at one moment in time. The definition requires that there be progression (worsening) of symptoms over TIME, at least a six month interval, if not more.

As a PCP I order the appropriate labs, get a neuropsych evaluation, and perhaps do brain imaging if I know that the neurologist to whom I will be referring a patient prefers they come with imaging. 

The MOST important thing I do is that neurology referral. I also treat thyroid and vitamin deficiencies if found, and discontinue meds that may be contributing to cognitive impairment.  

Peg:  get your husband to the neurologist- make that appointment now; by the time he can be seen, enough time may have passed to show progression. 

The other thing I do is start a trial of antidepressants, so that this confounding, often co-existent issue will have been addressed by the time the patient sees the neurologist

Marta

Drina:  your husband had a “fixed” injury in 2010. The virus did its damage at the time, but apparently there is no ongoing process that is destroying additional brain function, as there is with Alzheimer’s and many other dementias.  The improvements you saw early in his recovery were likely due to reductions in brain inflammation after the initial injury, but deficits remain.

It matters not so much what his condition is called (unless you need a name for disability or other benefits).  His deficits are what they are. I am sure your lives have changed significantly because of these deficits. I am sorry that you feel unsupported. 

We will do our best to help you with any questions you may have.

DrinaJGB

Marta-

  Thank you.

 Yes, I am well aware of his injury in the beginning being due to the assault the virus did to his brain, and subsequent sequelae from floating debris in the brain thereafter. It was a rare and horrific experience, and something I have dealt with for all for these years; mostly figuring out what works and what doesn't on my own.Believe me I know all too well what that virus is capable of because we have both lived through it and lived to tell about it.

The problem from day one since his most unfortunate misdiagnosis and days- delayed anti -viral administration as a result of the misdiagnosis, is the rarity of the disease (1 in about  500,000)---so you have to wonder how many physicians have actually seen it much less treated it.

These are all things we have faced. We continue to carry on with our very altered life. But through it all as a result of his life changing disease and what that has taken from us both ,and all of the blundering the first crucial days-- I continue to have what I call a crisis of faith in the medical community.After 11 years I still find myself asking the question how much different might the outcome have been had he been properly diagnosed sooner; one which will never be answered. That's just the way it is.

Marta

Drina:  was the causative virus isolated?

Palmetto Peg

I am definitely going to get going on the appointment with a neurologist - and I won't call the doctor by that name.  I think by the time we can get an appointment my DH will probably have forgotten why he didn't want to go.  I bought a book of brain teaser games and puzzles and am going to start doing those with him.  I know they won't help a lot, but if I can get him away from the TV for a while every day that is a good thing.   

Thanks for all of the suggestions - and I am going to keep reading the learning everything I can about dementia.  There is so much good information here!

Palmetto Peg

Thank you for all of the information on the role of the PCP.  I think my biggest issue was not understanding what an MRI can tell about dementia.  I thought that was the answer and I would know where we were going to go with this.  I feel so much better informed now.  My PCP did do bloodwork and has put him on a B-12 supplement because his levels were low.  Thyroid was okay, and the rest of the bloodwork was all normal. The cardiologist added a low dose of a statin - and believe it or not - these are the first ever meds or supplements he has ever taken! Great information to add to my learning curve!

M1

Peg, I would suggest you ask more about the B12.  If his levels were truly low, that warrants further investigation and usually requires injectable replacement (weekly to monthly shots).  Oral supplements are not sufficient for true B12 deficiency.  And true B12 deficiency is one of the things that can cause memory/cognitive issues.

DrinaJGB

Marta--It was hsv.

Quilting brings calm

Definitely inquire about the B12 shots.  My step-dad was coming up with odd delusions regarding my aunts. That  and other issues made me think he was having his own cognitive issues. He had a CT scan scheduled on his neck and chest and I asked for one on his head, the cancer doctor then called him in for blood work too.  His head CT was supposedly normal, but his B12 levels  were low.  

Cancer doctor said that they had probably been low for a while, and that it meant he was no longer able to absorb B12 through food or tablets. So he started on the shots. I noticed some  improvement after a month or more. I don’t think that’s the total cause of his issues, but it seems to have helped a little.  At least I know we’ve eliminated one possible cause. 

I can’t seem to get his PCP to even do basic testing on him. Most likely because he knows my dad would refuse very impolitely, and refuse to come  back. I think he’s decided to concentrate on dads physical issues, which are serious too. 

Iris L.

Many older adults cannot absorb vitamin B12 from food or supplements.  It has to be administered sublingual or by injection.  In a person with a known problem, definitely injections should be administered.  And he should be followed up to see if the dosage is sufficient and if the B12 level is increasing.  Low vitamin B12 also causes an unusual type of anemia.   Does he have anemia?

Iris

Kibbee

Although DH has been seeing a neurologist for a number of years, we did not get a diagnosis until DH saw a neuropyschologist and went through complete neuropsychological testing as part of an evaluation for possible Normal Pressure Hydrocephalus.  NPH was ruled out, but the neuropsych gave us a diagnosis of Major Neurocognitive Disorder based on the testing she did.   While it is helpful to have a name to tag on to his condition, it didn't really tell me anything I did not already know.   I already knew he had neuro issues (balance, coordination, gait) and cognitive challenges (executive function, short term memory).   I have felt for years that DH's problems stem from the whole brain radiation he was given as part of treatment for a malignant brain tumor over 20 years ago.  The neurosurgeon we also saw as part of the NPH evaluation confirmed that this is likely.

We have one more appointment coming up, this time with a neurologist who sub-specializes in movement disorders.  Goal here is to evaluate for Parkinson Disease.  

Just a word of advice, if you need an appointment with a neurologist, do not wait - call and schedule it now.  There is a serious shortage of neurologists in many states and your wait time for that appointment could be quite a while.  And if you need to see a neurology sub-specialist it can be even worse.  In early June we called to schedule the appointment with the Neurology Movement Disorders specialist, and the earliest available appointment was in late October.

Marta

Drina-it typically is HSV. Did your beloved receive IV acyclovir?

I am so sorry for this outcome. 

Palmetto Peg

The PCP did say that she would check his B-12 again in three months and if it was still low she would do injections.  He is taking 2500 mg daily right now.  Would it be appropriate to ask for the injections now to rule out that being a cause of the memory loss and confusion?  I plan to ask for the neurologist referral tomorrow and get started.  While he is still mostly reasonable, I will come up with a reason why we need to go - insurance requirement is a good one!

DrinaJGB

Hi Marta--Thank you. Yes, he received IV acyclovir, but after the optimal window for administration due to the misdiagnosis of stroke. Only after he coded on the stroke floor was an MRI done to reveal he never had a stroke, but HSV encephalitis. By the time he received the acyclovir he was on life support and comatose.PCR later confirmed the hsv diagnosis.

Marta

Oh, Drina..  I am so sorry.