Test show no brain problems

Marilynh

Went to neurologist last week. On the way my partner had one of his verbal attack episodes to the point I cried the whole way there. They went over the eeg test, mri, and blood work.  They said the test showed no problems with his brain and only thing showing up in blood work was thyroid problem. So my partner said he doesn't have dementia. He still has to do the memory test next month. I was shocked.  He shows all signs of dementia. Even my friends say he does. I am angry and sad that I didn't get an answer that day. I don't know what to do now

M1

Hi Marilynh and welcome to the forum. The fact that the tests are normal isnt that surprising, they often are. None of the tests you mention is diagnostic for AD. A normal EEG means he doesn't have seizures;  normal MRI means no stroke or brain tumor. The thyroid problem showed up on the blood work and may need treatment, but probably doesn't explain everything. So he could easily still have AD.  Stick with it.....this forum can be a big help.

towhee

What MI said. They are not saying he does not have issues, they are saying they have not yet found a complete explanation. Hang in there, try to keep things calm and get him to the rest of the testing.

Iris L.

Welcome Marilynh.  Read up on anosognosia.  Even though your LO does not yet have a dementia diagnosis it will help you to learn more about the characteristics of dementia.  Anosognosia is important because people mistake it for denial.  The PWD (person with dementia) truly believes he is fine, and sees no need for doctors or tests or any household changes.  If you try to convince him of reality, he will resist and become upset.  You will learn workarounds from the members.  Keep posting questions.  

Iris L.

Emily 123

Hi Marilyn,

Have they come up with a plan for the thyroid levels?  If he needs supplementation I believe that it takes about a month for the levels to settle once therapy is adjusted, so if the neurologist didn't address that you might want to give his PCP a nudge.  

I'm sorry that the your partner's take away is that he's fine. It just makes it an uphill battle for you.  Maybe he'll forget?

MN Chickadee

Don't give up. The official diagnosis often comes after they exhaust all other causes via tests, MRI etc. My mother's diagnosis of Alzheimers came after they ruled out all the other dementias. It's sort of a best guess, we won't know unless we have an autopsy of the brain after death. She didn't do a spinal tap or PET scan (I think PET always is paid out of pocket in this process if I am remembering correctly?) so we're in the "it's likely Alz" diagnosis camp. Also in the "it's DEFINITELY some kind of dementia" camp. It's important to make the neurologist and any other providers evaluating him aware of behaviors at home. Write down a list of symptoms and detail the verbal outbursts. Take video. Keep a diary or list of occurrences. This helps them determine what is going on. Lots of our LO can keep it together for a half hour enough to appear normal. Send written documentation ahead of time under the radar.

Palmetto Peg

My husband's MRI was normal, too, but he certainly is not.  The memory test administered by the PCP showed that he had pretty severe cognitive problems, so that may help you at least feel that your concerns are valid.  The test had 30 questions and he got 20 right, and believe me, they are not that hard for a person will normal cognition. I am waiting for an appointment with a neurologist and hope to get some additional information then.  So far, my DH hasn't been verbally abusive, but he has basically lost all short term memory and gets very stressed when there is any change in routine.  My DH knows something is wrong and will even tell others than he can't remember anything, but he doesn't see it as any kind of problem.  I think it just takes time to get a better handle on what is going on.  In the meantime, lots of good information here!

Jane Smith

I’d add that my mother had thyroid problems AND dementia. It’s not mutually exclusive. 

We fixed the thyroid, but she still had dementia, which we could not fix, only mitigate. 

Please hang in there as much as possible and be persistent in seeking a diagnosis. Best wishes.

ButterflyWings

Marilyn, some caregivers have used their phones to record the inappropriate behavior so they could "verify, prove" to the Dr. what is really happening at home.

Also, my DH had a very normal MRI, to the point the neuro clinic and his PCP announced "nothing to see here". While he was making HUGE financial mistakes unbeknownst to me, and could not remember what city we had just spent 3 days in, nor where he parked his car, or that we had a 30 minute conversation in the morning. He didn't just forget what we talked about, he did not recall talking AT ALL, and it scared him when I showed the phone records. That got him to go back for more testing to see if there was something treatable, and we eventually confirmed AD through a spinal tap. He was aware of the diagnosis for less than a year, and now has anosognosia - no understanding that he is impaired. We just live with it.

You are not crazy. Learn all that you can about dementia and what may lie ahead. Welcome to the club we don't want to join, but there is lots of wisdom here, and caring people helping each other by sharing insights and even just being a listening ear. Read everything you can, just search on specific topics if you want. 

The biggest thing for me was learning that my DH's high cognitive reserves masked serious problems long before I realized it wasn't just "normal brain decline due to aging". We were in really hot water by the time it became clear as you said, that something is really wrong no matter what he says. (And family deniers, don't even get me started there lol). I understand they didn't want it to be true and were relieved at the missed diagnosis. Well, 3 years later, I am still trying to drag us out of the deep deficits he caused while I had no clue that he could not be in charge anymore. 

See a certified elder law attorney. Just to find out "what if he has dementia? What legal planning steps should a spouse take?" That will help you to learn what is necessary to protect decision-making rights (Durable Power of Attorney), and assets needed for his long term care and your survival during and after. Good luck! You have lots of company. We are all rowing this boat together. That should be done like yesterday. Please.

Here are 2 articles I found super helpful for me and others in our family and friends circle.  

6 Ways to Help Someone Who Doesn’t Know They’re Ill: Anosognosia in Dementia – DailyCaring

http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf