Have dementia symptoms but tests have come back negative

Posted by rigatoni1 @rigatoni1, Dec 11, 2025

Can anyone relate to this??

Started having having night time hallucinations about 18 months ago and some memory issues. After much back and forth with my doctor and insurance I finally got to see a neurologist. He sent me for a brain MRI, a SPECT scan and did a blood test for Alzheimer's. All the results are negative, but the symptoms still remain. He made a couple of changes in my medications to see if that might be the cause, but symptoms still remain. He is now talking about a PET scan and I'm wondering if it's worth it. What would a PET scan show that the other tests didn't? He thought it might be Parkinsonism/LBD since that's what my symptoms pointed to.

It's just been a rollercoaster of emotions and anxiety!! Has anyone else had this experience??

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sanabuju82 | @sanabuju82 | Dec 22, 2025

Hi, my primary symptom was memory issues, verbal retention, word finding. Diagnosed with MCI back in 2015, primary issues focused on those areas of the testing. Fast forward to 2024 and two separate findings of Amnestic MCI at Penn and Penn State, I received an Amyvid PET scan which showed "moderate to frequent neuritic plaques." This was a diagnostically positive scan for amyloid presence. That in itself is not diagnostic of Alzheimers as you can have amyloid but no issues as described. Together with the MCI diagnosis, a "borderline" CSF result for biomarkers and the positive Amyvid scan, I was diagnosed with Alzheimer's related MCI. From that point, the progression of symptoms helps determine if you will cross to dementia. Based on the above, I qualified for Leqembi which I hope to begin in January. Choosing Leqembi or Kinsula is a whole different conversation and thread. Best of luck!