Question

Delinda60

Wow, I am also new here and you guys and your advise are amazing!! My husband began experiencing problems early last year. He lost his job due to his memory decline. Fast forward to this year and it is even worse but neurologist will not diagnose him with Dementia/Alzheimers. Even though last years MRI showed volume loss in the right temporal lobe and hippocampus, and then the MRI from a month ago so more volume loss. She just says MCI. He is scheduled for a 2nd opinion with a different neurologist on May 31st. The other neurologist a couple of weeks ago when we went back to let them see his further decline, did prescribe Aricept but he hasn't started taking it yet because of the upcoming neurology visit on the 31st. I am afraid if it does help him then the new neurologist will think there is nothing wrong with him. Am I being paranoid or is this the right thing to do?

Dio

What is the Aricept dosage? In treating dementia symptoms with medication, the common motto is: go low and go slow. If it's a low dosage, you may want to try it out and see how your husband reacts to it. Aricept is one of three common medications generally prescribed for Alzheimer's but is also off label for Lewy Body Dementia. If you start your husband on Aricept, please do let the new neurologist know how much and how long your husband has been taking it. Do you know what each of the neurologists specializes in?

jfkoc

I think it is always best to leave no stone unturned. If nothing else you will know you have done everything you can think of.

Please write down information to get to the new Dr before the appointment. Please include questions that you have.

At the appt the Dr will talk to your husband. Please sit so that you can disagree with what yoou husband says without him knowing.

As for a diagnosis...Alz is not easily diagnosed. There is a protocol to follow and even then it is something of an educated guess..

As to the meds....they do not even help everybody so do not worry about not starting them.

-Judith

Delinda60

Dio, thank you for your response and advice. She prescribed 5 mg then transitioning to 10 mg.

Delinda60

Jfkoc, thank you for the good advice. I already have a list started.

storycrafter

Delinda, it can take a very long time to get a specific diagnosis. In my husband's case, it took seven years before he was diagnosed with bvFTD. He had several other things listed before that, like, MCI, depression, anxiety, ptsd due to work stress.

It was a neuropsychologist, who did multiple thorough testing and compared dh's own test scores to his previous tests, who made the call. The neurospych doctor said my personal notes were also very helpful and taken into consideration (I kept a list by date, of my observations of dh's changes, very short, facts only, easy to read points).

About the medication. If it were me I wouldn't wait on trying it. Just take note of any changes you see in your husband and share your observations with the doctor. If he does improve after starting the med, that tells the doctor useful information in itself.

Wishing you the support you both need.

Delinda60

Thank you storycrafter! From what I’ve been reading in this group it seems like it isn’t unusual for it to take years for a diagnosis which honestly I find sad. These poor people go unmedicated for years when medication could have at least slowed progression down. But,with that being said I will start giving him the Aricept and let the new neurologist know. Thanks again.

mrahope

Just a comment, FWIW. My DH was also prescribed this drug, but had side effects right away and could not continue to take it. It might be important to know whether your LO can even tolerate the medication at a small dose.

RCT

i cant add to the advice given..it is sound. I had the same thing happen..I knew something was wrong and finally a neurologist said MCI and his memory and other cognitive functions slowly declined and another neurologist finally gave an Alzheimer’s diagnosis. He takes Memantine and Galantamine. He is maxed out on dosage levels at this point. I am not sure how much they are helping but definitely not hurting. His decline has been quite slow. She started him very slowly and worked the dose up gradually. I agree that starting him on Aricept is the way to go. Blessings

Delinda60

Thank you RCT and mrahope for your comments.

storycrafter

My dh can only tolerate a half dose. Beyond that he feels nauseous.

Delinda60

StoryCrafter I will definitely watch my DH with this.

Hellogoodby

If you need a diagnosis for insurance purposes, the best way to get one that is difficult to challenge is to get a comprehensive neuropsychological exam. They can be expensive, but unlike a diagnosis by a PCP or neurologist, they can support their diagnosis with a wealth of objective test data. Even without baseline testing they can show the specific cognitive losses characteristic of a specific type of dementia. I don’t suggest that they can give an absolute answer, but they can still provide a huge amount of data. And relate that data to specific functional limitations.

I don’t have the benefit of the experience that many who post here have of the early stages of Alzheimer’s or other dementia, as my wife was already at stage 6 before her limitations overcame my denial, which was powerful. But I can say that the neuropsychological exam satisfied the long term care insurance company because of its specificity and objective support. In the end our health insurance paid for it because the PCP referred us, but I would have paid out of pocket because it was so valuable. It will help you understand the limitations much better, too.

Noemit1966

Hi Delinda, You are taking all the right steps to make sure that the correct diagnosis is given to your husband. Starting the medication is very important because it won't work right away. Just like any other medication it takes time to work in your system. What you are experiencing I've already went through, and it is a tough and stressful process. Prayers and luck to you both! Take care, Noemi

elainejr

My husband started Aricept but the nightmares were horrible so he just stopped. He has not been prescribed with anything new.

Noemit1966

Hi Elaine, My husband didn't get those symptoms or at least he didn't mention it to me. My husband takes Donepezil (Aricept) and Memantine because these are normally prescribed to work together as they help slow the process of dementia/Alzheimer's. There are a lot of supplements that were suggested by his Neurologist as well as his PCP. Do you need me to share the names of them with you? Please let me know. Take care, Noemi

elainejr

Thank you. I intend to ask about that at his next appt. He has never been stubborn about drugs but he was about that one. I’m also trying to figure how to get his dr added to MyChart for me as a proxy. If you have any other names of things, that would be great. Thank you so much.

Noemit1966

Elaine, the following are the supplements were highly suggested by his PCP and Neurologist: Organic Coconut oil (1 Tbs. daily), Organic MCT oil (1 Tbs. daily), Natural Fish Oil/Omega 3 (1 Tbs. daily), Magnesium 400 mg. (2 chewable tablets daily), Vitamin E/400 IU (1 tablet daily) and Vitamin D3/1000 IU (1 tablet daily). I give these to my DH after dinner, so he won't get an upset stomach. If you haven't seen a lawyer that can help you fill out the Power of Attorney forms do so right away. I did it when my DH was still coherent, and he was able to tell the lawyer that he understands what he is doing signing the forms. I also did the Will and Health Directives as well. I did it for myself also so I can be set in case I pass away before my DH. This will allow you to speak to the Disability office, doctors, hospitals, doctors, etc. The only place that doesn't acknowledge the POA form is Social Security. You have to go through them to fill out specific forms. I truly thought that I wouldn't have to worry about all this until my retirement age of 67 but future plans changed dramatically. I'm here if you need any other information on medicine or procedures during this hard process. Take care and stay strong, Noemi