Frustrated

Delinda60

My husbands journey began last year when he was fired from his job for being sent on a hotshot run and being unable to find where he was supposed to go and for it taking 8 hours to do it. Also the next day he put diesel in a gasoline pickup. PCP ordered brain MRI that showed volume lose in right temporal horn and hippocampus. Sent to university hospital and after further tests was told he was fine. Fast forward to now, the last 3 months his symptoms have increased dramatically so we retuned to PCP who ordered another brain MRI, which this time showed further atrophy more prominent in right temporal lobe and hippocampus. The radiologist written report stated “concerning for Alzheimer’s Disease “. Went back to neurologist today and she said that the MRI is same as last years and she believes his cognitive issues are caused from lack of not sleeping well and depression. She basically accused us of wanting an Alzheimer’s diagnosis. My husband is 61 yrs old, I can assure you this is the last thing we want. Just curious if others have had this kind of trouble finding out what is wrong? Beyond frustrated!!

loveskitties

You may want to consider a second opinion with a neurologist rather than a PCP...sad to say that many doctors of all specialties don't know much about Alzheimer's.

Getting an appointment with a neurologist might take months...in the mean time keep a diary of what behaviors are concerning to you and get copies of the radiologist reports.

Wishing you and your DH the best.

Delinda60

Thank you so much for your response loveskitties. This was the 3rd appointment with this neurologist. But yes we are going for a 2nd opinion.

Iris L.

Look for a Memory clinic at a major university medical center or an Alzheimer's Disease Research Center for a dementia specialist.

Vitruvius

You need to have your DH seen by a neurologist who specializes in dementia. This neurologist should administer tests like the MMSE and/or MOCA tests [these are short interviews to test cognition]. It is my understanding that MRIs are generally useful only for ruling out causes other than dementia for cognitive impairments.

I found an Alzheimer's Research Center that was part of a major university teaching hospital. There my DW was assessed by professors of Neurology and Neuropsychology who specialized in dementia. That proved crucial as my DW's dementia is considered rather rare. My DW's MRIs only indicated "minor brain shrinkage consistent with age". But a PET scan indicated significant issues with her left temporal lobe. My DW's cognitive testing also clearly demonstrated significant cognitive decline. She was diagnosed with Semantic Dementia, a variant of FTD.

Pat6177

Delinda60, sorry you’re getting the run around. I’ve been reading this forum for about 2 yrs and a lot of people have trouble getting a diagnosis. And my impression from reading is that docs seem to think that younger folks don’t have dementia so that makes it harder to get a diagnosis. My DH’s PCP did the clock test and MMSE test in her office and once she saw the decline, she referred him to a neuropsychologist for the testing. But he was 75 so it wasn’t out of the ordinary. Has your DH had the neuropsych testing done yet?

You do want the proper diagnosis for several reasons, one of which is to get him on disability.

In the meantime, you might want to make sure all your legal documents are up to date. Wills, and financial and medical powers of attorney. Good to get these done while he can sign. And remember that you don’t want to name him as your agent on the powers of attorney. If need be, you can name him and then re-do them afterwards naming someone else. If possible, see a Certified Elder Law Attorney. They should be able to let you know what the Medicaid rules are in your state. In thinking ahead, your DH may require memory care (which is rather expensive) and the lawyer should be able to let you know your options for paying for memory care.

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towhee

It is not unusual for a doctor not to want to give an Alzheimer's diagnosis to someone under 65. Because Alzheimer's is rarer in a younger age group they will often look for any other explanation. And sometimes even if they cannot find one they will diagnose MCI and not dementia. Aside from getting a second opinion, since a diagnosis is made by ruling out other possible causes, it would be good to address the possibilities the doctor mentioned. Has there been a sleep apnea test and medication prescribed for depression? If you can show that treatment for other causes makes no difference to the symptoms it might be helpful. Other than that they are looking for deterioration over time, so keep good symptom records.

MN Chickadee

My mother had a very similar experience. She was around 55 when she first reported memory issues to her doctor, around 60 she had a full neuro work up and MRI. They brushed everything off as lack of sleep, work stress or depression. They also hinted that she was looking for a diagnosis and basically told her to buzz off. She knew she was getting worse but could not get a doctor to go anywhere near a diagnosis, probably because of her age. Then by 64 she was terminated from her work for what sure looked like dementia related issues (no longer keeping up on paperwork, trouble with technology etc) and only then did it apparently become clear to the medical professionals it was dementia. She was later given an Alzheimers diagnosis. She went through all the stages of Alz over the next 10 years. It was extremely frustrating and demoralizing to her to not be able to get any answers in those early years but I guess the scans and tests didn't show it yet. She did not seek a second opinion, and we don't have teaching hospitals where we are so perhaps there could be a better outcome with a fresh set of eyes on it. Otherwise just wait a bit I guess. And document what is going on at home with notes or videos so you can show the doctors the full scope of the struggles.

Ed1937

Delinda, you have excellent replies above. Please re-read everything. I don't think there is much more to add, and I wish you luck. Everything said above is important.

Delinda60

Thank you everyone for all the responses. At the neurologist visit yesterday (and yes this is at UT Southwestern in Dallas, TX that is a Alzheimer's Research Center). Once she told us that his MRI this year was basically the same as last year, I began to ask questions. I told her of all the symptoms of dementia he is having, they did have him do the paper test of where he has to draw a clock (he was able to do this), look at pictures of objects and try to name them (he was only able to name one of them...didn't know the other was a pretzel), was unable to give yesterdays date, but overall she thought he did well. But, with all that being said I am going to call his PCP today and see what she thinks.

eaglemom

I'm very surprised by that at UT Southwestern. Was this a young PA perchance? That's just not how things have ever been run over there. I'm shocked and sorry.

Have you had any interaction with the University of N. Texas, the Health Science Center in Ft. Worth? I know multiple people whom have been diagnosed and continue under their care. They have a dynamic geriatric unit. Very people centered / patient centered. Also they are doing lots of good research. That's someplace you certainly would be able to get another opinion from.

Another resource for an activity for the both of you or just your DH - Dementia Friendly Fort Worth. They offer 3 programs daily (all Zoom) and usually all different. My DH & I participate daily, and its certainly opened up friends for him to relate to. Also good programs and things to participate in that he can succeed. Please do give it a try.

Jo C.

Hello Delinda, I am sorry for what is happening. Trust your instincts, and seek that second opinion.

My Loved One (LO) became noticeably symptomatic with a hit and miss variety of some changes. In diagnosis, an MRI was done, it came back basically fairly unremarkable. So did the next two MRIs over the next year or so. Verbal and paper testing was done and results of those were also fairly reasonable with a few blips but nothing startling; still the changes persisted. These types of results are not unusual especially IF it is NOT Alzheimer's Disease but rather one of the other,"related" dementias.

The type of dementia present can make a difference in testing. My LO was seen to rule out Alzheimer's Disease by the primary MD who was a Board Certified Geriatrician. The first Neuro appointment was more or less a great disappointment without diagnosis and more or less a "kiss off; "no Alzheimer's." I am an RN and knew that something was really wrong. SO; off to a second opinion from an excellent Neurologist who I made sure specialized in dementia as the majority of his practice and was highly experienced.

After a complete new exam, I learned something new. My Loved One did indeed have dementia, but it was not Alzheimer's. it was FrontoTemporal Dementia, (FTD). In FTD, the person retains much of their capability for test taking as significant memory loss and the overall level of function, (despite a few changes), in that dementia does not become evident until much later in the disease process and that can take a long time.

A SPECT Scan was done as part of the exam and there it was all lit up: FTD. As much as one does not want dementia to be present, it was a relief to have an objective diagnosis and name for what was happening and know with certainty what we were dealing with. The full scope of memory issues did not surface dramatically until far later.

Since memory testing is not that helpful with earlier FTD because so much memory is retained for so long, it turns out that an important part of diagnosis is family input regarding the changes that have become evident. That family input importance is even written in the literature.

Do get that second opinion and right up front request that not only Alzheimer's Disease be ruled in or out, but that ALL related dementias be considered in the diagnostics.

I wish you well on that second opinion, and again, trust your instincts.

J.

Delinda60

Jo C, thank you so much for your comment. I have heard of FTD but I haven't specifically asked the neurologist about that. It seems like all they were looking for was Alzheimer's. His PCP is very upset at the neurologist that he has been seeing at UT Southwest and she is in the process of finding somewhere else for us to go. She said that his latest MRI is worse than the one he had a year ago as well as his symptoms are worse. Fingers crossed and prayers being said that we can get some help for him.

Delinda60

EagleMom,

No he say the neurologist not a PA. I did speak with his PCP Wednesday and told her about the appointment and she was as shocked as we were. She is in the process of referring him to another neurologist. Thank you so much for your response.

HappyDog

It took me more than 18 months for the PCP to actually talk to me and use the "D" word regarding my DW! I have been hand delivering letters detailing various issues for the past year with no response until two days ago when she missed an appointment that she completely forgot and the PCP called me because she has messed up her phone so bad it goes to voice mail! I now have an agreement that communication comes to me so I can keep her on schedule, but I think that is more due to them not wanting any more missed appointments and opportunities to send a bill! Our medical system sucks!