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Not sure where I fit
saf67
Posted: Friday, October 14, 2022 10:40 PM
Joined: 5/6/2022
Posts: 2


Hi,

I posted here months ago but I deleted it as I wasn't sure it was appropriate.  I'm in my 50's and I feel there are probably changes in my brain but I don't know how to proceed and wondered if anyone could guide me.  Here's what I've got going on:

1) family history of AD (older onset)

2) subjective cognitive decline over 2-5 years.

3) can't perform certain research tasks that are thought to be associated with alzheimer's pathology. Based on how I performed in the Brain Health Registry Mobile Toolbox Study, was invited to be in a drug trial locally (that would involve PET scans) but then learned don't qualify because I take an antidepressant.

4) told after clinical neuropsychological testing (not research) that I don't have MCI or what is now called mild neurocognitive disorder because memory performance is now in the average range for my age but I note memory performance is significantly lower than what would be predicted from IQ.

I see a clinical neurologist and they are encouraging me to just sit tight, monitor yearly.  I think they want to be reassuring but they are just telling me it doesn't look like AD.  I am just thinking wouldn't it be better to identify if I have brain changes now before it is clear I have dementia and it is too late to do much?  But don't know how to qualify for a blood test or PET scan clinically if they are saying I don't now have MCI...

Any advice about getting imaging or blood test outside of a research trial (since my meds may exclude me)?  And if I should post this in a different board, please let me know!

Thanks!

 


Iris L.
Posted: Saturday, October 15, 2022 12:34 PM
Joined: 12/15/2011
Posts: 18502


Welcome saf.  You appear to be where I was in my late thirties, with memory loss.  In my mid to lat fifties the memory loss and speech difficulties advanced to the point where I was diagnosed as cognitive impairment not otherwise specified, and put on medication, which is helping me.  

 

All of us older adults develop some memory problems, but you did not mention something that is very important.  Are your memory loss and your other cognitive issues causing problems in your activities of daily living, at home or at work?  Do you have trouble writing checks, keeping up with your bills, or operating computer or smartphone technology?  Has your job issued you warnings on your annual performance review?  If any of the above are true, you need to let the neurologist know. 

 

 The diagnosis of a dementia is made only after ruling out other causes, which are called dementia mimics.  You already have major depression.  Major depression can cause pseudodementia, which looks like Alzheimer's Disease but is reversible when the depression is treated aggressively.  Is your psychiatrist aware of your concerns?  

 

In your case, I would be concerned that you are getting appropriate treatment, both with medication and with talk therapy.  There are different classes of antidepressants and newer antidepressants for patients who have persistent cases.  The dosage for all psychotropics must be titrated specifically for each person, because each person's response is distinct.

 

Dementia is progressive.  After six months or so, the neurocognitive testing can be repeated to assess changes.   Tests like MRIs and PET do not diagnose dementia, but they can add to diagnosis, also they can rule out tumors or strokes. 

 

In the meantime, do what you can to improve your brain environment.  We call these Best Practices, which are lifestyle habits that have been shown to help the brain.  They also help the heart.  Work on your nutrition and exercise.  Keep yourself cognitively stimulated.  Socialize.  Avoid or limit stress.  There are books that will go into detail.  Do not buy any "memory pills" over the counter, they do not help.

Write back, please don't delete your post.

 

Iris

 


saf67
Posted: Monday, October 17, 2022 10:20 PM
Joined: 5/6/2022
Posts: 2


Thanks Iris!  I appreciate your response given I wasn't sure what group was most appropriate.  And thanks for clarifying about the role of scans and other diagnostics.  And thanks for sharing your journey.  

I am not having too much trouble functioning.  I am sometimes forgetting things related to my work but I keep notes to jog my memory and I do recognize the content of the notes as soon as I see them.  

I guess the idea of a drug trial with a PET Scan was seductive in that I hoped it would help me learn if, from a research or academic perspective, there is anything here consistent with preclinical or prodromal Alzheimer's.  With that said, I think exercise and lifestyle interventions may be as effective as any drug being developed right now.

But at any rate, I'm doing okay for now.  Socializing fine, making appointments on time, paying bills, etc.

Oh, I should add--I'm on a very high dose of antidepressant and doing well mood wise.  I don't feel depressed or terribly anxious.  And yes, my psychiatrist is aware.  They don't think this is pseudo dementia but they don't think it's dementia either.

Thanks, Sarah