New to forum just diagnosed with Amnestic MCI due to Alzheimers

Jack16

After 7 months of testing, starting with Parkinson’s, which came back negative I have been diagnosed with MCI due to Alzheimer’s. I have had multiple cognitive tests, neuropsychological testing, blood work for Alzheimer’s bio markers (strongly positve for tau and amyloid) and now 2 positive Pet Scans

I started Kisunla last week. I am baffled by my symptoms, which a few months ago were very prevalent, but now seem to have subsided to the point where I am wondering if I have been misdiagnosed. My doctors say I have not been, and all along have thought I am positive, but I struggle to believe I am positive as symptoms have subsided.

My neurologist tells me that I have developed “coping mechanisms” and have “reserve cognition “ due to my education level, mind stimulation, socialization and physical activity amongst other things. All of this is new to me and I am frightened but also in disbelief.
Has anyone else experienced sporadic episodes? I would like to hear from others experiencing denial and or symptoms that fluctuate.

Watson1

hi jack i have ad you may be at this this time mild c i so your symptoms are bound to fluctuate. the brain is funny . they say you can't forget something until the thought is completed. what if you complete the thought and its just plain gone.did you have the thought or not that's the problem with alzheimers. you are in a new gray land. i can make myself a cup coffee take it to the dinning room do somtingelse for a millisecond and oh isn't that wonderful i already did just make my coffee and if you weren't paying attention i might have missed the glitch. your keen self-awareness will serve you well.

billw1133

Hi Jack, I've been diagnosed with ad for 18 months and have had very similar situations to yours. Both some fluctuations in my symptoms- even to my neuro-psychiatrist using the same terms "coping mechanism & cognitive reserve" with the same rationale you were given. Heck I've taught mnemonics for years- so I am going to do better on certain of the psychiatric memory tests, and this is a "coping mechanism" I've used for decades in my everyday life . Cognitive reserve is a real thing, as your doc described. But right now, in early stages of ad, I am listening more to my neurologist (ad specialty), he is evaluating the clinical tests and the biomarkers which are not effected by coping mechanisms and cognitive reserve. And looking at those results, he says I am somewhere in stage 2. I am referring to the 7 stage scale of ad. I think ongoing evaluation and tracking by a psychiatrist and a neurologist are both vital. So I have accepted my diagnosis. This does not mean I have "accepted" a doomsday fate with ad. On the contrary I mean to fight it, to trick it, do work arounds to lessen the impact of symptoms as they occur, to get even more creative with my coping mechanisms etc. Frankly, this is all stuff anyone getting older should be doing anyway, ad or not. Someone else on this list reccommended "Someone I used to Know" by Wendy Mitchelll I agree, it was familiar, scary, and inspiring all at once. Keep posting. Bill

Jack16

Thank you so much for the inspiration. It is comforting to know I am not alone being baffled by symptoms!
Jack

Jack16

https://alzconnected.org/discussion/comment/229061#Comment_229061

https://alzconnected.org/discussion/comment/229061#Comment_229061

Thank you so much for your input. I have been thinking I am the only one in this situation as much as I don’t like it it is comforting to know that I am not alone.