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Early Detection of Alz
kvmalek@gmail.com
Posted: Tuesday, October 29, 2019 10:36 AM
Joined: 10/28/2019
Posts: 3


Hey all ! Thanks for accepting me into the group.

How effective have you guys found PET scans in early diagnosis of ALZ / Dementia? I'm trying to book a scan because of family history but insurance doesn't cover. Also, not sure I would want to know if I am at risk because there isn't much I can do about it?
Michael Ellenbogen
Posted: Tuesday, October 29, 2019 10:44 AM
Joined: 11/30/2011
Posts: 2654


What type of PET scan?
Amelillo99
Posted: Tuesday, October 29, 2019 11:46 AM
Joined: 10/7/2019
Posts: 18


What kind of dementia do you mean Early onset or late onset and how many family members had the disease.
kvmalek@gmail.com
Posted: Wednesday, October 30, 2019 1:29 PM
Joined: 10/28/2019
Posts: 3


2/4 of my grandparents have had Alzheimer's ... I am wondering if I should do a PET scan ... don't want to go through insurance to avoid rates going up ... what are my options? 

 


jcalz2019
Posted: Wednesday, October 30, 2019 1:39 PM
Joined: 9/2/2019
Posts: 3


Both my parents and my grandmother had Alz. I had the APOE 4 gene confirmed thru blood work. Also had a lumbar puncture to analyze my spinal fluid which came back as consistent with Alz. I was diagnosed with Younger-Onset AD. I was 56 years old when I was diagnosed in June of 2019, but believe I had been showing signs since November or December of 2017.

I hope this helps.


Jo C.
Posted: Wednesday, October 30, 2019 1:42 PM
Joined: 12/9/2011
Posts: 10197


You can contact the Alzheimer's Assn. Helpline at (800) 272-3900.   They can probably answer your question. They are open 24/7, 365 days a year; there are no fees for this.

Your name is familiar; were you at any time working with a group regarding Scans?

By the way; using your direct email address as your avatar may not be safe; probably best to change that so you do not place yourself at risk.

J.


Amelillo99
Posted: Wednesday, November 6, 2019 5:03 AM
Joined: 10/7/2019
Posts: 18


If i were you i would not do this pet scan because Alzheimer’s is not a rare disease and there are many people who have grandparents with Alzheimer’s what does not mean that they are at a much higher risk than the others and even if they Find out that you have white and grey matters doesn’t mean that you will develop the disease later in life. Many people with white and grey matter won’t develope the diease.
chinacat
Posted: Monday, November 11, 2019 11:47 PM
Joined: 5/25/2018
Posts: 14


Hi kvmalek, welcome to the boards. I had the 18F-FDG PET scan done last spring; my dad has had AD for at least 18 years, very slow progression for the most of it, according to my mom. We were told of his condition 5 or 6 years ago. He has two copies of ApoE4, and testing determined that I inherited one copy but I am asymptomatic at this juncture. My dad is now in MC and no longer remembers me, and is now starting to forget my mom. I work in the academia area of scientific research so the scientist in me just had to find out if anything in my brain was in the early developmental stages of AD - "Knowledge is Power". I had my scan done at the state university's medical center where I work, so I am very confident in their technology, abilities, and interpretations. It is a very personal decision to make, and it's not for everyone. We paid cash for the scan and the scan is not in my medical records because I am insured through my husband's work, which is in a different health system. Someone had warned me about it being a "pre-existing condition" if the findings were positive, thus might have an effect on insurability, but I believe it is still illegal to deny coverage for pre-existing conditions but you may want to check into that before doing it. I am one of those people that has to be prepared and have plans made, but I am also one of those people that "just had to know", I couldn't continue living with the big unknown +/- hanging over my head, so it wasn't a difficult decision for me, and I knew that I would be able to handle the results, good or bad. As soon as the IRS-1 protein detection blood test is cleared by the FDA I will have that done, and another PET scan repeated in 5 years if the technology hasn't changed in the interim. I will say that early detection = early intervention, and there are things that can be done to possibly slow AD's progression and improve quality of life. After his diagnosis, my mom enrolled my dad in several drug studies that he participated in over the years and she kept my dad very involved in all sorts of activities to keep him engaged - they had a very full schedule but it kept them both happy and busy together for a long time. Sorry for the long post, I hope I'm not coming across as an advocate for the scan, but as I posted earlier it is a very personal decision and not for everyone, but it was the right decision for me. I wish you the best in whatever you decide.
Amelillo99
Posted: Tuesday, November 12, 2019 12:03 PM
Joined: 10/7/2019
Posts: 18


How many years before the beginning of the disease can predict the test and what symptoms is the Test looking for?
chinacat
Posted: Thursday, November 14, 2019 12:10 PM
Joined: 5/25/2018
Posts: 14


Hi Amelillo99: Allow me to clarify that there is no test yet reported that will 100% accurately "predict" the onset of AD; many are still in the research phase. According to the peer-reviewed research publications that I have read, and there are many that report the same findings, amyloid beta accumulates within the nerve cells of the brain many years (anywhere from 10-20 years) before any AD symptoms develop. Here is a link to one of the publications that reports the use of 18F-FDA PET scan imaging for diagnosing AD: ncbi.nlm.nih.gov/pmc/articles/PMC4332800/  "Brain PET in the Diagnosis of Alzheimer's Disease", Charles Marcus, MBBS, et al.  

The PET scan doesn't detect symptoms, it looks for physiological changes of glucose metabolism within the brain, and radioactive tracers are used to signal amyloid beta accumulations; therefore, these data help researchers when diagnosing AD patients. With that in mind, and my dad's time line of the development of his AD symptoms, I chose to have the PET scan as I discussed in my post above. I hope this post helps answer your questions.


Unforgiven
Posted: Thursday, November 14, 2019 1:35 PM
Joined: 1/28/2013
Posts: 2615


Just one thing about insurance.  I don't think you can be denied health insurance on the basis of a pre-existing condition, but it can surely affect long term care insurance, life insurance, and possibly drivers liability insurance.  My own mother failed to qualify for LTC pre-diagnosis merely on the basis of poor physical health conditions.  Those same conditoons raised the premiums for her Medicare Supplemental insurance policy that paid for deductibles and co-pays, in her case, still worth it because of frquency of office visits and other care.

I say, prepare for the worst financially, follow Best Practices, and hope for the best.  And don't be so prudent that you forget to enjoy life right now.

 


DEMENTIASUPPORT
Posted: Sunday, November 24, 2019 6:15 PM
Joined: 8/22/2019
Posts: 31


My mother died 10/28 from Breast Cancer and she also had dementia. She was 89. I'm 65 and my daughter told me today that I should get tested for dementia because I'm forgetting things. We don't live in the same town and talk or FaceTime on the phone. I asked my sister in law who I talk to weekly and my friend who lives in my same complex if they saw any signs and they both said no. I have been so emotional today thinking about it. I read about your APOE 4 Gene blood test. Can they tell by that? If so, what can be done about it? Sallie
Amelillo99
Posted: Monday, November 25, 2019 2:31 AM
Joined: 10/7/2019
Posts: 18


But the Apoe4 test won’t tell you if you have dementia or not. You should better go to a neurologist and make some cognitive tets
BadMoonRising
Posted: Monday, November 25, 2019 8:58 PM
Joined: 4/22/2017
Posts: 278


DementiaSupport
Please do not seek a diagnosis for at least six months after your mother's passing.

 Testing for the APOE4 gene can only tell you if you carry the APOE4 gene. It can't tell you whether you have or will get Alzheimer's (or any other dementia.) It can tell you that you are at a greater risk of developing AD, but you already know that, don't you? 

Regardless, you have recently experienced a tremendous amount of stress with both the caregiving and your mother's death. You need time to both decompress and grieve.

That said, could you come up with a cool nickname so we won't have to refer to you as DementiaSupport?   



HowDoYouDeal
Posted: Sunday, December 1, 2019 11:01 PM
Joined: 2/17/2019
Posts: 246


Most of the time, Alzheimer's occurs at random, only 1% of cases are genetic.

Check out the DIAN Dominantly Inherited Alzheimer's Network, they will ask you a series of questions to help you determine if you are at risk. --

************************************************************************

You likely want to research more into your family's health history**, before you do that, buy insurance,

 Life, long term care...with in-home care (pricier), or facility only care.....consider all of it.

 Until its set, don't seek out any MORE information about your medical health or background than you currently have.

Because you need to be able to honestly answer any and all questions to get or bump up your insurance coverage. Once you have more information, or results, if you know it and don't disclose, that's fraud, and they'll cancel your coverage and you will have a heck of a time getting a new policy.

Technically, they can't refuse you a policy based on a genetic test, but once you've got the results, they are in your medical file, which the insurance company has access to.... I suspect they might re-think your rating, or consider other health concerns more serious, unofficially, once the see if you have AD. If they rate you or deny you, you CAN challenge it, but that is a huge hassle.

************************************************************************

--  If you are at risk, DIAN will arrange for and pay for the testing.

You can choose to find out, OR-

You can join a DIAN trial without knowing your status! YES YOU CAN TAKE PREVENTATIVE ACTION WITHOUT KNOWING IF YOU HAVE THE GENES FOR AD. You can get medicine without learning your status.

DIAN offers trials that are triple blinded or 4x blinded, so you won't know your results. But they will be locked in a file somewhere. If you have the gene you have a 2/3 chance of receiving the active drug, if you test negative, you will always be in the placebo group.

If the trials succeeds, those on the placebo will be offered the real treatment, for same length of time as the trial!

 

https://dian.wustl.edu/about/

DIAN is super awesome, but there are also non-drug treatments currently in clinical trials too. One is a helmet that shines a light on your head. I am not kidding, and even crazier, it seems to help people.

There's a whole bunch of stuff out there about potential treatment, prevention, this one is just the most surprising, and the place where I started to feel some hope. You can find all sorts of this stuff on the clinical trials page.

https://www.scientificamerican.com/article/an-hour-of-light-and-sound-a-day-might-keep-alzheimers-at-bay/

 


MelissaH
Posted: Tuesday, December 3, 2019 7:02 PM
Joined: 12/3/2019
Posts: 3


My sister had symptoms at 56. She is now 63 and had MRI show genetic type dementia. My father had "shrinking brain" and his sister had AD. I've discovered Ancestry death record saying Senility or memory issues as cause of death  I'm 53. I've got memory loss affecting my family and job  Recent MRI normal. Don't know what to do  Dr. Thinks its stress  My short term memory is horrible. I get overly angry or nervous  Not my personality. I don't know what to do. Oh, my novelty DNA test showed that APOE or Allele for early onset too  Dont think Promethease tests are accurate. Although it did get my A neg blood type and gender correct  Lol. Any ideas for testing?
BadMoonRising
Posted: Tuesday, December 3, 2019 9:27 PM
Joined: 4/22/2017
Posts: 278


Prometheus uses the raw data that you upload to its site. But you also have access to the raw data and can look for the APOE4 genes yourself. In my experience, 23andMe correctly calls the APOE4 SNPS while Ancestry simply replaces an APOE4 with an APOE3 and all is good. (Not.) I have used Prometheuse and it does not test for the familial type early onset AD genes because the direct-to-consumer DNA test results that you upload to Prometheus doesn't have the data needed by Prometheus to perform that particular analysis. 

That said, there is more than a handful of genes that in combination with the APOE4 genes that raises one's risk for AD. Interestingly, 23andMe tests for a gene that does not raise the risk for AD but instead accelerates the decline in those who develop AD. (BTW, research has shown that women who carry the APOE4 gene are at a much higher risk of developing AD than men that carry the same gene.) Interestingly, people who carry the APOE4 gene accumulate more amyloid in the brain but may never develop Alzheimer's.

Anyway, I have my raw data from three of the companies and I occasionally check for newly discovered SNPS that are highlighted in the medical literature. For some unknown reason, this gives me a degree of comfort even if I find I carry the newly discovered genes. 

Please feel free to ignore my posts - sometimes I get on a roll and I'm unstoppable, even after going back multiple times and rewriting and then later correcting what I rewrote. Is that a run on sentence?! I think my anxiety about this weeks first annual neuro visit is making me a little anxious. LOL


MelissaH
Posted: Thursday, December 5, 2019 2:59 AM
Joined: 12/3/2019
Posts: 3


I'm 53. I have short term memory loss, trouble finding words, trouble with naming an item "turn on that thing, you know, the thing the the refrigerator on it, I can't see."  "Oh, mom, you mean the lamp?" I get confused when driving and forget where I am in familiar places. Some days are good, some bad. My father and his sister had AD. My sister, who is 63 just had positive MRI for ischemic vessel disease. Her memory loss started at about the age I am now. She takes Arisept and finds it helpful. So far, I've had an MRI that was normal, a neuro-psych test that showed ADHD, and memory loss that they think is stress related. I plan to have my hormones tested. Can you think of any other testing I should try? Do my symptoms sound similar to early onset? I'm struggling at work because I've forgotten some important things, and I make careless mistakes when I try hard to check twice. I'm lost and alone.
MelissaH
Posted: Thursday, December 5, 2019 3:06 AM
Joined: 12/3/2019
Posts: 3


No worries. Thanks for responding. I just realized I posted the same question twice. Lol. Good luck at the neurologist
Amelillo99
Posted: Thursday, December 5, 2019 8:35 AM
Joined: 10/7/2019
Posts: 18


An MRI can’t tell you if you have the genetic type of dementia. Only a gene test can tell you if it’s genetic or not. And there are two different kinds of genetic types the first is early onset familial Alzheimer’s there are three genes that are responsible for the disease and if you carry one of them you will probably get Alzheimer’s and then there is the apoe4 gene if you carry theis gene you are more likely to develope the diesease but it’s no guarantee.
Iris L.
Posted: Thursday, December 5, 2019 9:12 AM
Joined: 12/15/2011
Posts: 16187


MelissaH, you might ask for an overnight sleep study in a hospital sleep lab to look for sleep apnea.  I had similar symptoms as you. A trial of Exelon patch gave me improvement in those symptoms.  An Amyviid PET showed I do not have Alzheimer's Disease.  My diagnosis is cognitive impairment not otherwise specified.  My cognitive impairment prevented me from continuing in my career and I had to retire on disability.   The diagnosis of a dementia is made after all other  possible causes have been treated and/or ruled out.
BadMoonRising
Posted: Thursday, December 5, 2019 3:28 PM
Joined: 4/22/2017
Posts: 278


Melissa, I may have missed this...Is there any particular reason you would be stressed (other than stressing over your cognitive issues)? I was about your age when I first began having similar symptoms.

Do you have a university affiliated memory clinic within driving distance?