F T D Anyone know Frontal Temporal Dementia? Symptoms startiNow what?

Posted by kahyo @kahyo, 6 days ago

I'm 66 yrs. I've had 3 MRIs, 1 CT , EKG, EEG, pending PET scan. (1 more test and I could play scrabble. ) #1 MRI ER Diagnosed with TIA and pronounced microvascular disease during a trip. They referred to a Neurologist when at home. #2 MRI They said FTD. #3 MRI. Frontal Temporal Dementia plus Seizures, Waiting for results.

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

SusanEllen66 | @SusanEllen66 | 6 days ago

@kahyo you sound almost like me.
I’ve done all the “abc” and after a year, I still don’t have a definite diagnosis. However, doc said I have traits of FTD & PSP…
I live alone, and today a video on YouTube with a woman above the text I was reading scared me! At first glance I thought she was live, in my room! It took me a split second to cancel that thought…yikes.

Zebra | @californiazebra | 6 days ago

In reply to @SusanEllen66 "@kahyo you sound almost like me. I’ve done all the “abc” and after a year, I..." + (show)

It must be very scary to hear the doctor say that. The doctors, friends and family all blew off concerns my mother and I had about her cognitive decline. Her general health was great. Finally, she had full neuro psych testing and the results explained why others didn’t see what we saw. In some areas she still performed at the 99th percentile for her age yet other areas at the 1st percentile for her age. Still other areas were 25, 50, 75. So she could appear fine in a casual conversation but she and I saw the quick memory loss, confusion and inability to learn something new. It was hard on her. After testing, she was diagnosed with early vascular dementia.

She fell and fractured her leg and in the nursing home she got so confused and would think people on TV were in her room among other issues. The meds they gave her probably contributed to that.

Do you have family you can stay with if you get to a point you shouldn’t live alone?

merrychristmas | @merrychristmas | 5 days ago

Did you have a PET scan? Do have any symptoms of dementia?

SusanEllen66 | @SusanEllen66 | 5 days ago

In reply to @merrychristmas "Did you have a PET scan? Do have any symptoms of dementia?" + (show)

@merrychristmas
Yes I’ve had a PET, MRI, MRA, EEG Neuropsychological

Yes, I have dementia. I am seeing a great group of neurologists (research) on Monday. They may or may not have a diagnosis to tell me which of the dementias I have.
Now, I’m thinking, does it really matter? We know I have dementia, it’s progressive, there is no cure, and it’s fatal.
Why should I worry? I don’t want to spend what precious time I have left chasing after something that doesn’t really matter…

SusanEllen66 | @SusanEllen66 | 5 days ago

In reply to @californiazebra "It must be very scary to hear the doctor say that. The doctors, friends and family..." + (show)

@californiazebra
I understand the situation with your mom. The doc wasn’t concerned because I can still function very well.
The EEG showed my brain was slowing. The Neuro Psych test was above average all the way down to “horrible”.
I’ve had every test, and in 2 days I meet with a team of doctors. They have reviewed my files, and may have a diagnosis.
I really have to manage by myself because I would have to hire someone. I can take care of my physical needs. I’ve got my everyday matters covered. There are friends who call and visit.
I am a 75 year old feisty (sometimes) woman.

Thank you,

SusanEllen66 | @SusanEllen66 | 5 days ago

I’ve gotten so much from DAA Dementia Action Alliance. They are a support group for dementia patients. I suggest you all check them out

Zebra | @californiazebra | 5 days ago

In reply to @SusanEllen66 "@californiazebra I understand the situation with your mom. The doc wasn’t concerned because I can still..." + (show)

@SusanEllen66
Luckily my mother had me to move in and help her. I would be in your boat. You sound like me that you’ll fight till the end to remain independent in your own home. I hope you find the answers you seek.

merrychristmas | @merrychristmas | 4 days ago

In reply to @SusanEllen66 "@merrychristmas Yes I’ve had a PET, MRI, MRA, EEG Neuropsychological Yes, I have dementia. I am..." + (show)

Disregard the response I wrote you. I didn’t read your response about your PET scan.
FTD is frustrating

taylor05 | @taylor05 | 3 days ago

In reply to @SusanEllen66 "@merrychristmas Yes I’ve had a PET, MRI, MRA, EEG Neuropsychological Yes, I have dementia. I am..." + (show)

I totally understand that! I'm so sorry it has you too! I was set up to go to a nerophyiscaloligcal test. 6 hours at least and this is to pin point what kind it may be and how far along in it. I thought NO I canceled it because they might wa t the diagnosis, but I don't right now. It's whatever that's not treatable anyway. I've had several ischemic strokes and a few dead areas now in my brain
Systemic sclerosis (Sleraderma) , small blood vessel disease Raynouds disease, Fibromyalgia . I just want to stop all this bad news!! I understand 👍🏻

kahyo | @kahyo | 3 days ago

In reply to @merrychristmas "Disregard the response I wrote you. I didn’t read your response about your PET scan. FTD..." + (show)

Yes, FTD is frustrating. I'm kind of looking forward to the Apathy part. Then I won't care what FTD is doing now. Sorry, that's negative thinking. We must be positive so we can be as little a burden as possible for our caretaker. I'm blessed I have my husband. I'm 66 and he's 79. I've been restricted from driving (it's the worst part) and he can still drive. Truth is I should be taking care of him. He stresses. 2 more tests to go (PET and neuropsych evaluation) and I'll be done.

Please sign in or register to post a reply.