Can't Get A Clear Answer/Diagnosis

CheriMrkva

Hi,

This is my first time here and I feel like I'm finally talking to my people. My husband began his mental decline around Easter he is 66 years old and has a complex medical history. He started by thinking that things that just occured had occured before, then he started saying that this car that was driving beside us is always beside us at the same time every time we are out, didn't matter what car it was he always says the same thing. His primary care said he has mild cognitive impairment and sent us to a neurologist the neurologist looked at his CT scan of the head from a previous trip to the hospital and listened to us, he said that my husband did not have dementia or alzheimers and although the primary said he saw mini strokes on it, the neurologist said he did not have any TIA's. He said that because my husband could do the math and say the months by what month came after that he passed. Although he didn't know what month, his birthday, or who was the president. The neurologist said he needed a psych consult immediately. Of, course that meant in the next three months because I couldn't get an appointment with any of them before that. He is currently in rehab from a fall and the PT there told me, that what signs he is showing is consistent with TIA's. He can no longer remember anything for 3 minutes, the social worker asked him what room he was in and he didn't know, she told him room 6, she talked for a minute then asked him again what room he is in he said room 2. She suggests a new neurologist, however our appointment with the psychiatrist is this Wednesday. The EEG came back negative as well. My husband is also taking mucus from his mouth and slinging it on the walls. He was doing this at home too. I have to work so I have a camera that I watch him on. I'm very fustrated and he wants to come home but he is still weak. Does any of this make sense to you all, or do your loved ones show any of this type of behavior?

Jo C.

It is sad, but in many instances,n a CT or MRI Scan nor an EEG cannot actually "see" the Alzheimer's changes. My LO had dreadful downturns getting worse and worse; there were multiple MRIs over time which showed nothing. Yet; the changes were dramatic. One needs an excellent physician who specializes in dementia. If one uses a Neurologist; one need to choose one who sees many dementia patients as a routine part of his/her practice. Being that your initial Neuro outcome was not of help; I would want a second opinion from a highly experienced professional. If you have an appointment with a Geriatric Psychiatrist, that is good; they see many dementia persons and also are more skilled. (And of course, a P.T. and Social Worker are not dementia experts.)

Our first MD: a board certified Geriatrician misdiagnosed my LO and it led to highly negative circumstances as well a inappropriate medication which made things worse.

Finally; when we got to a highly skilled Neurologist who sees many dementia patients as a routine part of his practice, and that is where all things came together. He ordered a SPECT Scan which did indeed show FrontoTemporal Dementia whereas neither the CT or MRIs had showed much of anything. If there had been strokes; then that could indeed affect the existing dementia and make things even more difficult. If strokes had been occurring; one might even think of vascular dementia being ruled in or out.

A PET Scan is the golden mean for such tests of the brain, but insurance does not usually cover it and it is terribly expensive in the several thousands.

You are doing the right thing in having a second exam and opinion. I think if this were me, I would want to find a different Neuro specialist if I were to continue with that specialty.

Best of luck and so hope all works out much better,

J.

Ed1937

Cheri, welcome to the forum. It is a good one, and you will get a lot of help and understanding. Please re-read the post from Jo C. Her posts are always spot on, and very helpful.

Dio

So sorry you're going through this. But it took a very long time before my DH was properly diagnosed. My DH had stayed in the hospital's Neurology Dept. and subsequently in a psychiatric ward for 2 weeks. Because he was only 61, the mere mention of dementia did not come up. The battery of tests, including EEG, all came back negative, except MRI which showed some shrinkage in the frontal lobe. But without a baseline image, the doctors could not confidently say how much the brain has shrunk, and that it was possibly just due to "normal aging." Yet, no one could explain away his psychotic behaviors or physical stiffness, facial ticking, vision distortion and catatonia. Upon discharge with Major Depressive Disorder, they recommended Cognitive Behavioral Therapy (CBT) which caused DH even more anxiety and psychotic episodes. The psych ward discharge doctor did suspect Frontotemporal Dementia and had referred us back to Neurology for followup, but Neurology declined the referral. Said they did all they could do and that there's nothing more they could do (what a bunch of baloney). Long story short, 10 months later, through various loops and hoops with a tenacious psychiatrist who wouldn't take no for an answer, we got on a speed track and finally saw a memory specialist back at the same hospital institution, and we finally got a probable LBD diagnosis. Our psychiatrist is our forever guardian angel.

Glad you have an appointment with a psychiatrist. Perhaps in advance, let him/her know what your surveillance camera captured.

Keep pushing for answers. Seek a second or third opinion. Find a neurologist who specializes in memory disorders. Do you have any medical university or dementia center of excellence near you?

jfkoc

I have to agree...keep pushing.

You also have to keep learning. You are the advocate. You are the team captain. It is a huge responsibility and many times you only have your gut feelings to rely on.

Everything you wrote we understand.

Please read everything you can online about the diagnosis process and make certain every step is done correctly.

We are here to listen, to share and support. We are right next to you.

-Judith

Jgirl57

Hello and welcome; I do hope he will still be able to see the psych on Wednesday . You will learn here that there is nothing exact about brain disease and you will have to become the “expert “ for your husband by reading here often and asking a million questions to the nurses, NP’s, and Doctors . Sorry you and your husband are on this journey.

ImMaggieMae

Welcome to the forum, the one we’re sorry you have to join. You will get so much good information here and so many good ideas of things to try. Sometimes doctors are just too busy or dismissive to do what they should be doing. Don’t be afraid to get a second or even a third or fourth opinion if something doesn’t seem right. My husband has been through numerous CT scans, MRI’s and even a Pet scan, none of which was positively conclusive. (Jo C., you’re right that they are very expensive. I think the neurologist may still be fighting that one out with Medicare.) It’s often hard for neurologists to get an absolute diagnosis. Sometimes I think it’s just a process of elimination, knowing that it not certain types of dementia. What is important I at a certain point is having the right medications and a doctor who is willing to listen and to work with you, especially if you’re caring for your loved one at home. Like Jgrl57 said, you have to become the expert. Or as his neurologist said, “You are the boots on the ground.”

Iris L.

Please understand that CT scans and MRI scans are not meant to be diagnostic of any dementia, but are meant to rule out trauma, tumors or strokes. The dementias are diagnosed by ruling out all possible medical causes of the cognitive and behavioral signs you are seeing. Plus there must be a significant decline over time.

Iris

sbcspin

https://alzconnected.org/discussion/comment/185907#Comment_185907

Yes, you are the captain, but you need a crew. Don't think you have to do it alone.

CheriMrkva

https://alzconnected.org/discussion/comment/185898#Comment_185898

The psychiatrist did not find anything either, however he does want us to come back in 6 weeks to see how things are going. I think from everyones advise on here I am going to find a new neurologist and check with John Hopkins or the memory care facility closer to the city. Thanks, I don't feel so alone.

SDianeL

My DH was diagnosed 2 years ago with possible Dementia-Vascular after a 3 hour Neuro Psychologist test. He can't have an MRI so they were using CT Scans. I kept a list of his behaviors and gave them to his PCP, Neurologist & now Geriatric Psychiatrist. Based on my list of behaviors I gave them they reviewed his CT Scans again and recently changed his diagnosis to Alzheimer's-Posterior Cortical Atrophy which affects his visual perception. Keep pushing. The behaviors are your key. Keep a list. Give the list to ALL the doctors. the new diagnosis has helped me help him. Here's the list that someone else posted that I use to document his behaviors. https://tala.org/wp-content/uploads/2019/04/Tam-Cummings-LLC-Handouts.pdf