Results of PETScan

Anna2022

Hello all!

Just got the results of my DH's PETScan and the reports says, "no specific pattern of dementia identified by PET." What the heck does that mean? Has anyone had that result and can you tell me what this really means? I suspect it means ruling out FTD and ruling in a more garden variety dementia?

We have a follow-up with doctor the second week of January to discuss results, although doc has offered to get started on "treatment with the monoclonal antibody drugs." I'm just trying to find out any information before hand.

Thank you for your help.

M1

Anna, I think it means that no scan is definitive, and that's about all you can say. I don't know the current stats on how much FTD can be definitively ruled out be PET scan--it may be better now than it used to be.

The monoclonal antibody drugs are Lequembi and Aduhelm. Aduhelm is given by infusion monthly, and Lequembi every two weeks. It's invasive and difficult, carry significant side effects (risk of brain bleeding and edema), and questionable benefit (still being debated, best if in an ongoing trial). Read a lot, and ask a lot of questions. The earlier he is in the process, the more he may benefit, but that is still debated also.

I don't think there are many people on the forum who are currently receiving treatment; if there are I hope they will chime in for you.

jfkoc

I agree with M1....do your homework before starting anything so that you can make an informed decision. You might also want a second opinion.

There is usually a lot to read online . Drugs.com may be a good start.

Anna2022

https://alzconnected.org/discussion/comment/192696#Comment_192696

Thank you, M1. There is no way I could get DH to attend the labs and infusions required. And, as he thinks nothing is wrong, its doubly sure he would not agree to any such treatment. And that's ok, especially in light of the reported side-effects.

brooklynborn123

https://alzconnected.org/discussion/67574/results-of-petscan

Anna--we got a similar result from my wife's pet scan about a year ago. Here are the doctor's comments:

"PET scan is attached and shows really minimal findings. Nothing conclusive or highly suggestive of alzheimers, but we will continue to watch."

I had thought that the PET scan was going to be much more useful. It is very expensive and getting insurance to pay for it required some extra effort. As for continuing to "watch," what choice do I have? No question that my wife suffers from dementia and that it is getting worse with time. But what is causing it is anybody's guess. I just go with Alzheimers because that is easiest to explain to people...very frustrating though.

Anna2022

https://alzconnected.org/discussion/comment/192727#Comment_192727

I also thought the PETscan would be more helpful - and we had to work a bit to get insurance to cover and find an imaging center that accepted our insurance. It was quite a process from August to December. We have an appointment to discuss the results but I suspect the doc will say much the same as your doc said. UGH. I'm sorry you're going thru this without answers. It's a beyond-frustrating situation.

Marta

Although we are getting closer to definitive diagnosis for the dementias in life, the fact remains that a definitive diagnosis can only be made after death.

It takes time to come to acceptance; it will come sooner if we lower our expectations of a firm diagnosis.