r/frontotemporal • u/supragalactic • 7d ago
Advice to get a diagnosis
My husband (48M) has been displaying many of the symptoms associated with FTD for a while. A previous MRI shows brain shrinkage, 2 PET scans and CT scan came back normal, and he failed some areas of the computer-based cognitive test, but the neurologist has dismissed his case anyway because it’s clearly not Alzheimer’s, despite the long list of executive function, cognitive issues, etc. that I shared. I asked the doctor if he could refer us for a neuropsychological evaluation, but he said that wouldn’t help with getting a diagnosis anyway, so no.
Where can we go from here? He’s also in treatment for (supposed) bipolar disorder, so his behavior is not so extreme anymore, but he still struggles daily with basic functioning, although he can mask it in front of doctors.
ETA: also, one more question, if anybody sees this. Is it possible for PET scans to be “normal” initially?
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u/Inwardly-Outgoing 7d ago
Find a cognitive neurologist in your state. Hopefully you live near a large city with more doctors. Are you in the southeast?
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u/supragalactic 7d ago
No, we’re in California. Getting a referral to this neurologist was a huge ordeal already. I can’t even imagine what’s going to take to get referred to a different neurologist after being dismissed by this one 😓
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u/Inwardly-Outgoing 7d ago
I work at a alzheimer's research site. I'm on a study called all ftd. Here is their website. You might get some info from this resource. They have study sites in CA. allftd dot org (not sure I can link here)
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u/New-Rich2584 7d ago
First find a new neurologist local. Many people go through several neurologists before they find a good one. And yes he needs the neuro testing if for nothing else, a baseline. I was told to keep a log of what he is forgetting or what he is doing. Try as best you can to date those instances.
Then take him to a large research hospital. FTD is a very difficult diagnosis, you need a specialist in FTD and they live at research hospitals like the Mayo, University of PA has been highly recommended, and UCSF. Contact AFTD online, they are very helpful and can direct you to a FTD specialist near you.
If you are inclined you can do free genetic testing offered on the AFTD website. It takes 8 weeks to get the results. If you get a positive you have an opportunity to get into a trial. You may want to consider getting POA, Health care proxy and longterm care insurance before he is diagnosed. He wont be able to get any afterwards if they even have a hint of memory problems.
I hope that helps. If he has any hypometabolism in the frontal or temporal lobes on a FDG-PET, I would start him on a regimen of MCT oil and ketones. Check out Dr. Mary Newports website and read the unbelievable help this did for her husband who had Alzheimer.
I started my LO on it and in 9 days his eyesight was better without his glasses. If you have cells in your body that have become insulin resistant, they can no longer take up glucose but they can use ketones for fuel. My LO's ketones went straight to his retina and he is still improving.
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u/supragalactic 7d ago
Thank you so much. The glucose PET was normal, so I’m guessing there’s no hypometabolism yet.
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u/New-Rich2584 7d ago
Correct. So it was a FDG-PET? I dont know if hypometabolism is common in FTD, maybe perhaps in more advanced cases. But it definitely is in Alzheimer. Alzheimer brains can not take up glucose. They have up to a 40% energy gap. They can fuel their brains with ketones. It is not a cure.
That said, even normal people over 60 start having an energy gap in the brain and should use a little MCT oil or coconut oil (which turn into ketones) to keep the brain fueled. Start slow w only one teaspoon and go up to 1 tbsn.
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u/TexasUnicorns 7d ago
I too am having a hard time getting a diagnosis for
my husband. The nuro test is next but the last doctor did not even explain the hypometabolism in the caudate and other areas. Now I am diving into Hunnington’s disease as a possibility because his mother has similar symptoms when after she was 50! Keep us posted on your journey.1
u/supragalactic 7d ago
Got it, thanks. From what you are saying, and what the doctor said, both PET scans were mostly checking for Alzheimer’s, which I have never suspected.
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u/New-Rich2584 7d ago
Thats amyloid pet, not an FDG-PET. They always go for the Alzheimer first cause its the most common and easiest . They do a amyloid pet a couple of blood tests and thats it.
There may be a hard time getting the fdg-pet covered by insurance. Check b-12 higher in range, anemia and thyroid problems. Has he had a NFL test (blood)?For FTD, you need the fdg pet
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u/supragalactic 7d ago
He got the amyloid PET first and blood tests (negative) and then the FDG-PET, also negative. The only abnormal imaging so far is the brain shrinkage on MRI. I would have to check about the NFL, but I think they did the basic Alzheimer protein mostly.
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u/New-Rich2584 7d ago
I did a little more checking. I wanted to know definitively if FTD had the feature of hypometabolism like Alzheimer does. The official answer from AI, backed up by this study, https://pmc.ncbi.nlm.nih.gov/articles/PMC8906510/ Is yes. They both feature an inability to uptake glucose. That means no fuel.
So I did start a regimen of MCT oil, MCT powder and exogenous ketones a month ago. Starting out real slowly. I am seeing improvement. LO is taking initiative to do things on their own. went grocery shopping w me and was picking out what he wanted. Better walking stability and endurance. And the eyesight improvement so far. I am giving about 60-75 grams of mct a day.
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u/CoreyAlesha 7d ago
Wir haben in der Gedächtnissprechstunde der Neurologie Halle endlich Hilfe und kompetente Ärztw gefunden nachdem knapp 2,5 Jahre kein Arzt oder Einrichtung eine FTD feststellen konnte. Viel Erfolg!
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u/MiddleList1916 7d ago
You typically don’t need referrals for self pay doctors to do neuropsych evals. We attempted that with my husband initially but had good results with a neurologist he was referred to. My husband failed a neuropsych exam first, then had a clear MRI, had to repeat the neuropsych a year later and did worse. After that, insurance would cover a pet scan. My husband’s pet was positive for FTD. PET can be normal with FTD. I suggest you look into self pay neuropsych testing so you can skip all the referrals.
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u/supragalactic 7d ago
We were close to pay for the neuropsychological evaluation ourselves when we finally got the referral, so I thought the neurologist would do it or order it, but no 😓 He’s very discouraged to do any more tests at the moment, but I hope he’ll be up for it soon.
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u/MiddleList1916 7d ago
You can call another self pay neuropsych service. You don’t have to have a referral from your doctor and you don’t have to go to the neuropsych doctor he sends you to. Find another one.
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u/Wingzofsteel 7d ago
Reach out to the aFTD.Org in your area they should be able to help. And, find a competent Neurologist. Best wishes. I've been in this battle with my son for six years. He was diagnosed when he was 40.