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Younger-Onset AD or Other Dementia
Early Detection of Alz
Hey all ! Thanks for accepting me into the group.
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?
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.
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.
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.
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.
DementiaSupportPlease 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?
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!
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.
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
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?
Hi Sallie! Sorry for the delay in responding, I'm not on these boards with great regularlity and I just saw your post. I feel I need to clarify my post above regarding diagnostic blood testing and the ApoE4 allele. The blood tests for detecting AD are still being researched and are not yet available, but the data so far has been very positive and researchers hope the tests will be approved by the FDA in the next few years. These blood tests detect either a protein or other molecules in the bloodstream/brain that could identify people in the early stages of AD, years before symptoms develop. This is different than testing for the ApoE4 gene. People who are found to have one or two copies of the ApoE4 allele does not determine one will develop AD; ApoE4 is a risk factor gene, meaning that a person's risk is greater for developing AD if they have at least one copy, compared to someone who carries no copies of ApoE4. However, depending on the research publication, it is reported that anywhere from 45%-60% of AD patients have at least one copy of ApoE4, while the rest do not carry the ApoE4 variant; therefore, there are obviously other factors involved, including other genes, that can affect whether a person develops AD or not. Additionally, ApoE4 is thought to have an effect on how quickly AD develops, but for my dad, who has had AD for 18 years and counting, has two copies of ApoE4...he is definitely a statistical outlier.
For my situation, it is extremely important for me to be prepared for the possibility of getting AD, as I would most likely have no one to oversee my care should I become debilitated. Watching my dad slowly slip away because of this horrid disease has been profoundly sad and heartbreaking as well as scary, but I am very grateful that he is being well cared for. Since I won't have that luxury from both a physical as well as financial standpoint, early detection/diagnosis would give me the ability to make my own decisions regarding my care and to plan for the future, and not someone who has no vested interest in my well being.
As I stressed in my previous post, undergoing whatever diagnostic testing that is currently available is a very personal decision and is definitely not for everyone. I know there are many folks who disagree with my decisions/opinions, and that is their right. But for me, I would rather know ASAP than find out later on when I might not have the ability/be legally permitted to make my own healthcare/LTC decisions. Having this knowledge empowers me and gives me control so I have a piece of mind and am much more able to enjoy my life.
I hope all this helps answer your question! I do wish you the best as you make this journey with your LO.
Check out the Dominantly Inherited Alzheimers Network, they will ask you about your family history to determine if you are in the risk group for Early Onset, if you do, they will test you and if you want you can take part in a clinical trial without finding out your test results.
Of course, if you test negative, you'll be assigned to the placebo group and will be helping to find a solution to Alzheimers.