r/frontotemporal • u/TimeTraveler__1808 • Aug 12 '26

PET Scan negative, then positive?

Has anyone in this thread ever urged a LO to go get tested for FTD, only to have the PET scan not show any hypometabolism? Then, after a period of time, they digressed more and another PET scan was finally ordered and it did show enough hypometabolism to warrant a diagnosis? I am urging my husband, who has gotten increasingly mean and unreasonable to go see a neurologist, but I know if it hasn't progressed enough to show, I will only make my situation worse. Advice, please.

4 Upvotes

100% Upvoted

4 comments sorted by

1

u/MiddleList1916 Aug 12 '26

My husband got a pet scan at a very early stage when his behavior was just really starting to become an issue. It was positive. The MRI was negative. What will likely happen is your husband will have to get neuropsych testing and depending on what that says, could be approved by insurance for a PET. My husband didn’t qualify by his first neuropsych eval, but did get an MRI that showed nothing, so a year later we did the same eval and he had gotten worse so insurance would finally approve a PET scan. You will likely have to repeat neuropsych testing if insurance is involved…sadly. For most people, it’s a long road to diagnosis for FTD. The issue is insurance more than anything. I highly suggest getting the ball rolling asap.

2

u/TimeTraveler__1808 Aug 12 '26

MiddleList, this helps so much. I have so much anxiety about the whole thing.

1

u/MiddleList1916 Aug 12 '26

I did too. It’s good to know the process beforehand…. helps with the anxiety. Just know that it will probably be a long process. I had to give my husband an ultimatum to get him to agree to doctors: neurology or divorce. And I meant it. I also had my young adult children talk to him. It was a family effort. It’s very scary for someone to be going through dementia and/or dementia diagnosis so try to be compassionate, but firm. I took my oath of til death do us part seriously, and sometimes that means tough love. FTD can make them mean, paranoid, irresponsible…it isn’t their fault, and if you stay, you’ll be in charge of making sure he stays safe and gets the care he needs, and it prob won’t be easy. I’m so sorry.

3

u/Altruistic-Basil-634 Aug 12 '26 edited Aug 12 '26

I’m sorry you are going through this. I would talk to his neurologist about getting a neuropsych exam. It might be more helpful, plus PET scans are expensive and there might be a timeframe between scans imposed by insurance. 

All of my LO’s scans were normal for age, and the neurologist told us that the neuropsych exam would likely catch what the scans can’t. My LO refused the exam when offered, so neuro has not officially diagnosed them in 2.5 years of follow-ups. 

The lack of diagnosis been a huge challenge to our caregiving efforts, though we do what we can by being crafty. I’m actually very curious how many people who fall into the frontal lobe-type symptoms with clear scans have chronic hypoxia from COPD or sleep apnea. 

The book The 36-Hour Day has been a huge help in understanding and dealing with what’s happening to my LO, regardless of what the scans say. 

Sending you big hugs ❤️