Tested but no diagnosis for significant memory deficits at 56 yrs old

Lightishere

Good morning. I have had two sessions of computer based testing at a neurology office as well as a three hour neurocognitive testing done at the behest of a neuro-psychologist. The neurology testing showed memory issues along with "executive functioning" abnormalities. The neurocongnitive testing primarily showed significant short and long term memory problems with high distractability.

The acronym "MCI" (Mild Cognitive Impairment) was mentioned by both the Neurologist as well as in the testing report from the neuro-psychologist, but I have not been officially diagnosed as having anything.

It sounded to me like the neuropsychologist deferred to the Neurologist to make a diagnosis, and the Neurologist says there is no diagnosis to make at this time and he advises to do repeated computer based testing every six months to see if there is any worsening.

Of course, now whenever I walk into a different room in my house and forget why I went in there, or struggle to figure out a complex issue in my job, I can only wonder if these are normal life struggles, or if my entire life is about to change because I have early onset dementia.

Yes, I have significant stress currently in my life. I am helping to take care of my 81 year old mother who is in the mid to early end stage vascular dementia. My brother in law committed suicide three months ago which has had a profound impact on my sister and her children. I am female and live alone. I worry about being able to take care of myself. My job requires me to hold a certification that I need to take an exam and re-certify every three years. I am questioning whether or not I will be able to continue to pass the re-certification test if I cannot learn or retain knowledge and I may lose my job and not be able to continue working in the field. So that brings on a great deal of financial anxiety.

I am doing another follow up computer based re-test today at the neurology office. It has been six months since the last one and about five months since I completed the test battery with the psychometric testing at the neuro-psychology office.

The ambiguity or unknown with this is the most difficult. I am not sure if having a diagnosis would make a difference and maybe it is better if I don't have an actual diagnosis. At least not having a diagnosis means it must not be severe enough to actually have a diagnosis. Which is a good thing.

I do attend a weekly local alzheimers support group, but it is more for care issues that come up with my mother. I have told people in my life such as family, friends, co-workers about the memory problem I am having, but my family tells me they don't see any memory problem with me so they have told me it is not occuring or that I need to get a second opinion. My friends and co-workers don't ask about it and I have the feeling they are very uncomfortable discussing it. And now I wish I had not told them because it has made things awkward with them.

I see a therapist who I talk with about having memory problems, but most of the time with him is spent talking about my struggle to adjust to the changing dynamic in my family because of my mother's declining health that there is not much time to talk about my fears with my declining memory.

Thank you so much for listening. It helps to not feel so alone in this.

Iris L.

Light, you have come to this side of our online support group. I'm sorry you have to be here but it's good that you have found support from a different perspective. I have quite a lot to tell you because I have been where you are now.

First of all, please accept my condolences in the loss of your brother-in-law.

I have news for you. With the "mentioning" of MCI after your testing, that IS a diagnosis. The problem is that people, including doctors and other professionals, do not respect this diagnosis. MCI is the explanation for your long and short term memory deficits, your executive functioning impairment and your distractibility.

The current thinking is that there is nothing to do about dementia. A doctor told me, "There's nothing you can do about it, so why worry about it?" Fortunately, I found a great neurologist and I found this message board in 2008. At that time the focus was on taking steps to prolong the early stages. I have taken these steps and they have helped me.

Also, doctors are caught in the dilemma of, how much to tell the MCI patient? I think that not saying much is their attempt to avoid scaring the patients. But the patients are already scared. And many patients and families continue on in a fantasy land, believing that everything is okay, just because the foctors don't say much. Receiving an MCI diagnosis is your notification to make major decisions about your life. Yes, your life is about to change.

The big feature of MCI is uncertainty, no one can predict how it will progress. No doctor can tell you. This can be an advantage, because you have a chance of stopping or reversing it. In other words, MCI can be a WAKE-UP CALL. IMO, it is crucial to determine whatever contributing medical conditions are present and to treat them. Your mom has vascular dementia, perhaps cardiovascular disease runs in your family. Be sure that all the dementia mimics have been checked. In my case, I had many medical conditions that impacted my memory.

This MCI time is the time to make major decisions. For example, where to live, how to enable income and manage expenses, and other decisions. You will need time to assess these situations and to receive competent, knowledgeable counseling. The majority of professionals who claim to help older adults are inadequate, IMO. I have had a lot of experience with inadequate professionals.

Regarding your job. Please stop talking about your health with your job. Do you know if you have receive any warnings in your annual employee review? This is important. Your job might be at risk.

I have more to tell you but I have to stop now. Please continue to post.

Iris

Janutt

Welcome lightishere,

I am so sorry for your loss of your brother and the health of your mom. Big hugs 🤗 to you. I have had the frustration of those tests and the doctors saying there is nothing they can do about it. I begged them that my family members had taken medication to help slow the progression. They disagreed with me. I went for a second opinion who specializes in cognitive, memory issues and he looked over everything including my Pet scan. He put me on medication for the EOA. I can relate to walking into a room or having a conversation and then completely go blank to why or what has happened. My family, friends, and in laws have also said that I’m fine (I have a family history of Alzheimer’s). They have also stopped talking to me especially my in-laws. Some of my family are cautiously talking to me as well as friends but they will not ask how I’m doing. My case was accelerated by other health issues. I’m glad you can talk to someone but it’s sad that it’s not what’s happening to you physically. Glad you found this site. I’m learning more as I trudge along and. Wish you all the best. I agree with Iris she has a lot of information to offer ♥️

Fresh Start

:) Lighthouse I understand and feel you. I too was recently diagnosed with MCI and feeling my way around this new life. Reading to find out information and making new connections. I had to stop working due to increased stress, anxiety and memory issues. Did not let my company know. I was in the process of seeing doctors. Decided to leave before I was fired. Finding I have to cut back on other things like night driving. Stay strong, schedule time to take care of you maybe a nice massage!

Amy Joy

Hi everyone I’m sorry to hear about your loss!

Its so hard when you have dementia in your family.

My mom has dementia.

and now older brother in homes and can’t remember me