RSS Feed Print
Diagnostic process (2nd generation) advice appreciated
Daughter#2_
Posted: Tuesday, December 29, 2015 2:05 PM
Joined: 12/29/2015
Posts: 11


I'm hoping some of you may have some advice on making my way through the diagnostic process. My father had EOAD (age 52). Sadly, I am at a place where I KNOW there are changes to my cognition occurring. I am not depressed. It is not somatization. There has not been lifestyle/medication changes. I'm hoping it will be something else. I've been concerned for over a year. My doctors have no answers and I feel my difficulties are progressing. 

 
 
I have gotten nowhere with my physicians, even with supplying them with my father's neuropsychological testing and death certificate. I feel as though I am reliving/defending his diagnostic procedure all over again. It does no good to hear "...but EOAD is so rare" "he/you are so young" from physicians when that was my reality for a decade as a caretaker. 
 

 

My GP advised to "try harder to adjust to my glasses," gave me a depression scale (angst) and an MME (which had borderline results). He referred me to a geneticist, who will not conduct a screening without samples from my Dad (which we choose not to do, at my mother's request).

 

 
It is affecting my work, my home-life/finances and relationships. My GP is hesitant to refer me to a neurologist/memory clinic because of my age. Your thoughts on persuading him? I can not afford a specialist without a referral. I am at a place where I just don't want to bother, but I do know that early diagnosis and treatment would be better...any encouragement or suggestions are truly appreciated. 
 

Michael Ellenbogen
Posted: Tuesday, December 29, 2015 2:45 PM
Joined: 11/30/2011
Posts: 4384


I would just tell your dr that he needs to send you to a neurologist or I would get a new dr. Make sure you have list of all your issues for him so they can understand all of your concerns. You should start out with the basics if you have done them yet.

 


BillBRNC
Posted: Tuesday, December 29, 2015 2:46 PM
Joined: 12/2/2015
Posts: 1018


I'm either second or third generation EOAD. My mother had it, and I think my grandmother might have had it. She died when I was very young, but I seem to recall the word dementia being tossed around back then, but I really don't know. I'm 65 and my symptoms became noticeable to me about 6 to 7 years ago. It isn't easy getting doctor's attention. I'm too young, I can't have it because I can report my symptoms so well, and so on and so on. But I was able to get a referral to a major medical center with a Memory Assessment Clinic, only I have to wait until early April. For now, I have a diagnosis of mild cognitive impairment rules out neurodegenerative disease. I wish I could give you some advice, other than keep pushing your local docs to give you a referral. It is also possible that a major center near where you live might be doing research on early onset Alz, and they might give you an exam if you enter a study there. Don't know, but just an idea. Good luck.
alz+
Posted: Tuesday, December 29, 2015 3:25 PM
Joined: 9/12/2013
Posts: 3608


Daughter-  there a few threads on this as everyone seems to battle getting diagnosed. I was part of a research group so had neuropsyche tests through them until went off the cliff on them, developed anxiety. Was led to diagnosis because of double vision.

Meantime - any insurance policies you need to get before a diagnosis, my thinking is off today but whatever you want to do financially BEFORE you get a diagnostic label do sooner rather than later.

Since there is no real treatment except living your best healthiest life, that is action to take now. Also the basics, lower your stress, weed your life of toxic stuff, get good sleep, be out in nature, do what you love.

advantages of a diagnosis? you know sort of what you will be dealing with, you get access to current meds.  Some do really well on the meds. You get a fresh look at the living.  I think you may also get benefits from new meds soon to come out.

 Seems to me people have problems not obvious to a doctor first - financial difficulties, losing things, visual issues, insomnia, mood changes, faulty decisions etc. I can still draw a perfect clock and type.

My Dad also had ALZ, I also helped care for him. Hope you post again. Lots of good people with information and guidance on this forum.

love and courage


Mimi S.
Posted: Tuesday, December 29, 2015 7:27 PM
Joined: 11/29/2011
Posts: 7027


Daughter #2,

I am so sorry you are being put through this.

Your profile doesn't give your location. Where is the nearest large University or Medical School with a Dementia Department? Do make an appointment there. An appointment will typically take a few month. That's OK.

Meanwhile, keep track of things that bother you.
From your library get a copy of Doraiswamy ad Gwyther, The Alzheimer's Action Plan.

 Also get involved in Best Practices"

1. is take meds as directed. You're not there yet.

 

2. Strenuous physical activitiy. Start low, but you want to build up so your heart is beat for a period at a fastet than normal rate.
3. Mediterranean Diet. I also take Omega 3 and antioxidants.

 

4. Varied cognitive activities.

 

5. Maintain or increase socializations. Most of us do not do well in large and or noisy crowds.
Iris L.
Posted: Wednesday, December 30, 2015 1:49 AM
Joined: 12/15/2011
Posts: 18362


Welcome to our online support group, Daughter #2.  Do your doctors know that your difficulties are affecting your work, your finances and your relationships?  Have you had a poor performance review at work?  Doctors respond best to written documentation.  


My internist was also not helpful and I had to find my own neurologists.  The first said I was fine, the second was not helpful until my neurocognitive testing came back abnormal.  Afterwards, he became a very good neurologist for me.  Be aware that you may have to seek another primary care physician if this current one is so obstructive.


Is there a grievance process at your health plan if you are not satisfied with the care you are receiving?  You might think about looking into that.


You can also call the Helpline and ask to speak with a Care Consultant for advice.  A Care Consultant is a social worker with special expertise in aspects of dementia.  An educator from the Alzheimer's Association told me to insist that the second neurologist proceed with testing and take me seriously.  The telephone number of the Helpline is 1-800-272-3900.  There is no charge for this consultation.


Please keep us updated at to your progress.  We are here to support you.  


Iris L.

 


llee08032
Posted: Wednesday, December 30, 2015 6:40 AM
Joined: 5/20/2014
Posts: 4408


Daughter2,

 

Be persistent and don't give up until you find the right doctor that takes you seriously. Start keeping a record of all the changes that you are experiencing and in what ways specifically, that the changes are impacting your work, relationships and finances. 
The_Sun_Still_Rises
Posted: Wednesday, December 30, 2015 8:36 AM
Joined: 7/24/2015
Posts: 3020


I am so sorry that you are seeing changes, that must be scary.  And that the doctors aren't seeming to listen, must be frustrating.  And I am so sorry about your father. 

Unfortunately, there still exists much misinformation out there.  So, us younger people often have to take the process into our own hands, for lack of better word. 

The true diagnostics are the neuropsych test, which is about a 4 hour test, run by neuropsychologists.  You will need 2 of them over time.  With dad's dx, you might have proactively had one just to get a baseline...because they need to see decline over time for a true diagnosis.  You could have the second one a year later (insurance will usually cover 1 a year).  Your primary dr can give you a referral for the neuropsych. 

Once you have the neuropsych in hand, the first one, you will want to have a few tests run to rule out any natural causes for what is happening.  And frankly, it is very nice if they find something that they can fix.  Some of those tests the primary can run.  You will want an MRI or CT to rule out tumor or stroke. 

When you get the second neuropsych, you will want to take those results of the labs and MRI...and that is where you will get your more solid diagnosis.  However, the first neuropsych test will tell you it too. 

I found my doctors and providers didn't want to say anything (and I was left declining with their full knowledge for 4 years), because they see the diagnosis as sad. 

On the good note, even if you have this...there are many years of good life to be had after diagnosis.  And, you have the benefit of having insight into both worlds of the disease.  There are groups and people supporting each other, so you are not alone in this. 

Hang in there.  And welcome to the forum.  And again, sorry that you are having symptoms. 


alz+
Posted: Wednesday, December 30, 2015 9:07 AM
Joined: 9/12/2013
Posts: 3608


Without a baseline neuro psyche test is it possible to have one test and draw any conclusions?

I was diagnosed due to double vision, which led to eye exam that noted missing fields in vision and tunnel vision, which led to MRI which led to neurologist who had treated 1000s of dementia patients.

The results of m last neuro test were compared to previous (part of research group) and I got a call from them after diagnosis saying my "drop off was so severe" I could no longer participate and they were going to recommend I see a doctor for a diagnosis.

 because slow loss of vision was not noticed by me, and I think common, maybe people could get a thorough eye exam under an insurance policy. Going from doctor to doctor, aside from being demoralizing, is expensive.


BillBRNC
Posted: Wednesday, December 30, 2015 11:17 AM
Joined: 12/2/2015
Posts: 1018


I might be wrong (usually am), but I thought the neuropsych test is a somewhat objective measure of whether your subjective symptoms actually exist, and whether the problems are progressive (hence two or more tests). It seems to me that there is no reason at all why a good doctor with extensive experience in the field could not accurately diagnose Alz based on a patient's symptom history over time, plus ruling out alternate causes. This of course assumes that the doctor believes the patient is capable and in fact is telling the truth, which is another reason why they like to have a spouse or close friend present to relate the symptom history as well. Personally, I'm tired of this cop-out that doctors use to avoid expressing a reasonably firm opinion, since that is what they are getting paid to do. Just what I think.
Iris L.
Posted: Wednesday, December 30, 2015 12:09 PM
Joined: 12/15/2011
Posts: 18362


Bill, her doctor has refused to refer her to a neurologist or for neurocognitive testing.  The doctor she has, her primary care doctor, evidently does not have enough experience to understand her symptoms, since he is blaming her symptoms on her eyeglasses.

Iris L.


Mimi S.
Posted: Wednesday, December 30, 2015 2:06 PM
Joined: 11/29/2011
Posts: 7027


Bill.

If you, from your library get a copy of The Alzheimer's Action Plan by Can't remember first name and Gwyther of Duke Univ., you will understand the process of diagonosis so much better.
Iris L.
Posted: Wednesday, December 30, 2015 8:03 PM
Joined: 12/15/2011
Posts: 18362


Doraiswamy is the doctor's name.

Iris L.


The_Sun_Still_Rises
Posted: Wednesday, December 30, 2015 9:08 PM
Joined: 7/24/2015
Posts: 3020


There are many processes and paths by which people are diagnosed.  And a diagnosis of Alzheimer's is always subjective to an extent. 

However, some things can make a diagnosis more likely than others. Like, if you have the gene (but still not absolute); if you have clear stroking (vascular dementia) on an MRI; clear brain shrinkage (still subjective) on an MRI.  That said, many have perfectly normal MRIs. The MRIs are truly just to rule out stroke, clots, tumor which may cause similar symptoms. 

The lengthy neuropsych test (run by neuropsychologists, not neurologists) is the gold standard, and gives the clearest picture...and can show whether the pattern is depression, MCI, or dementia.  Depression can look similar to dementia...so any doctor who diagnoses just on history of progression runs the risk of false diagnosis...and possibly missing something that can be easily treated.  I personally, would be very skeptical of any doctor who did that, but that is just me. 

All true dementias (Alzheimer's included) are progressive and fatal.  To show that it is progressive (and we each know this for ourselves, but to show them) a second neuropsych test is needed to establish decline over time.  To give an example, my neuropsych gives the diagnosis of "major neurocognitive disorder" which is the new term for dementia...it is not mild, not moderate, but major.  However, my neuropsychologist cannot say for certain that my IQ was not ALWAYS 86.  We can all know it wasn't, I know it wasn't, it used to be 163...but that is not enough for a diagnosis.  I will be re-tested in January.

Neurologists run countless other tests, as do primaries, to rule out anything else it might be that could cause the decline (B12 def, thyroid def, MRIs for stroke or tumor, etc.).  When all those things are ruled out aka no medical cause, and there is established decline over time...does the Alzheimer's diagnosis become truly possible.  Not that it is always done this way.  But, it you want to be thorough and certain...that is the path. 

At the very best, all you will ever get is a "probable" diagnosis of Alzheimer's, as they are never 100% sure until they biopsy the brain after death. 

The salient factor in all this, is the ruling out of anything that is treatable, curable, or fixable...so as to not have to needlessly die.  Like Normal Pressure Hydrocephalus. 

Again, everyone comes at this path differently...everyone seems to find a different kind of doctor who they feel best addresses this for them.  I say neuropsychologists because all they do are these tests...they study this, and they are the best specialists in this.  Everyone also comes into desire for a diagnosis for differing reasons...some just want it for disability, others, like me...we want to be absolutely certain, because again, who wants to die needlessly of anything can be stopped or treated. So that will also determine the path one takes.  Some also are unable to work and have to pay cash for these things, and so will want the simplest route...others, money is no object and don't mind the long and detailed route.  So all kinds of variables. 

Whether or not the poster's doctor believes her, they should be able to refer to neuropsych testing without much issue. 

Hope that helps clarify. 


BillBRNC
Posted: Thursday, December 31, 2015 9:39 AM
Joined: 12/2/2015
Posts: 1018


TSSR, thanks for your explaining response. I found it very useful to read what you said. I know I'm not entirely clear thinking when it comes to this diagnosis thing or the docs. I spent most of my professional career with different types of physician experts, and I found many of them to be blind to common sense or a different point of view, plus ready and able to say whatever they are paid to say. I know most are not this way, but I guess I got to work with the large ego I want money types. This makes me think badly sometimes about doctors and tests, and as I've said my wife is a doc, and she was never in it for money I can tell you that for sure, because she never made much, but did all kinds of free clinics and such. So there are many very fine doctors, including my current primary care doctor. He is a very close friend to boot. All this doesn't change the fact that I lack patience and expect too much. Anyway, I'm rambling on, but I just wanted to say I like what your wrote. And it is obvious that your current IQ is closer to 160 than to 80, just saying. What bothers me is that some folks start from a very high point when they get cognitive impairment, so it can progress for a very long time and they can still appear and test as if there is nothing wrong, except a true expert should be able to know the difference. As I've mentioned many times to my wife, I think a person would have to be almost dead not to get the mini test questions right, even if they had fairly advanced Alz or dementia. But I could be very wrong again. Oh, well, that's about it for now.
alz+
Posted: Thursday, December 31, 2015 9:47 AM
Joined: 9/12/2013
Posts: 3608


As usual off topic -

I do not have link at hand but ultrasound has been used to clear brains of induced plaques in mice.

Non harmful treatment.  mice got back all their crucial cognitive abilities. Given a chance, their brains regenerated.

  So I am thinking, maybe I should relax about this situation as it may be reversed in a few years. Maybe I should be trying more to get back in shape in case I recover from this and have to go back to laboring in the fields.

***********

People know when there is something wrong, not so hard to distinguish the cureables and treatables from the currently mystery of "ALZ".

 ALZ diagnosis bottom line means some one with the ability to prescribe agrees you are having the problems you know you are having.

  I do think many people with MCI will live to enjoy a remedy.


The_Sun_Still_Rises
Posted: Thursday, December 31, 2015 11:53 AM
Joined: 7/24/2015
Posts: 3020


You are welcome. 

I hear you on the doctor issue.  I spent 7 years sick and looking for an answer...and felt blessed when one could get over their ego long enough to admit, "I don't know."  But I have compassion for them too.  What they are told is so small.  Like with autoimmunes...they know nothing, just how they are told to treat it.  I feel for my doctors who watched me get sicker and sicker, and did nothing...I imagined how it felt for them to feel so helpless.  Still, the other part of me, the part of me that was dying to survive wanted to take them by the shoulders and say, come on now...

I used to work in the law too.  I like the crispness and clearness of it...that there were logical arguments to things.  The preciseness.  I loved the drive to get things just exactly right.  One of the first things I noticed to go on my ability to communicate (aside from reactions), was I could no longer be concise.  People, like my doctor, would get mad at me because I couldn't just say something in a single sentence...I would have to describe the events...at best, pointing to what I was trying to say, and hoped she'd get it.  I felt so helpless...had to do a lot of work forgiving myself.  I thought, if I could just tell my doctors right...they would be able to help me. 

Now I have even less communication skills.  No one in my personal life trips over that.  But people who should understand the disease do.  They think I should be able to write better.  I think, I am so glad and blessed I can write at all. 

My last doctor dumped me, with a week left of my thyroid med and refusing to even give me a one month rx...saying she just couldn't help me and didn't want to watch me get worse anymore.  My new doctor has been great.  Within our year together I have two dx's...and a med that almost completely clears the physical...like a new lease on life...only to find out I will die anyways, whatever.  What a difference a great doctor makes. 

Me, I wanted every test...I needed to be certain.  I prayed for it to be depression.  I prayed for it to be all in my mind.  I prayed for something to come up on those tests...which is a singularly weird place to be in...to be bargaining for there to be some kind of infection in my brain. Anything but death so young. 

The sad part of MCI, is no one seems to be looking into *what* caused it...I'd like to see them have a fix too. 

Sorry, all off-topic.


Daughter#2_
Posted: Saturday, February 20, 2016 3:11 PM
Joined: 12/29/2015
Posts: 11


Thank you all for your replies and advice. It has strengthened my resolve as I proceed through this process.  My GP is coming around and conceded his sincere concern, with a bit of sadness. His approach was to speak with my genetic counselor again before the neurologist. I have an appointment in 2 weeks~which is quick, considering it took 3 months for the first one. Since my last appointment there (It is a university hospital, one of the best in the region), I pursued direct to consumer testing through 23andme and had some irregularities in my PSEN1 data. (Has anyone else done it?  I'd be interested in comparing results) If the geneticist does not proceed with proper genetic screening, I'm asking for a second opinion or will head to a country with less stringent regulations and get it done. Thailand has good doctors and nice beaches *smile*

In my next follow-up appointment with my GP I will request a neuropsychological evaluation. Thank you for that advice. I agree, with my family history it should not be a problem, although prior to my last appointment there seemed to be an aversion to it. This should hopefully move things along. Thank you again for your support. 


The_Sun_Still_Rises
Posted: Saturday, February 20, 2016 5:48 PM
Joined: 7/24/2015
Posts: 3020


I have done the 23anMe test...although do no know which ones search for this diagnosis.  But happ compare results.

Sorry you doctor still be so slow this.  My providers have shared me long way that they feel like they real are spare patient by drag feet...as if no naming it will magically make it go way.  But it be hard us no knowing. 

Oh interesting...ran this one, an I have quite bit single issues there as well.  An man with II beside it.  

The one thing hard their site, is that you can no tell which letter be wrong letter. 

Do you know an software site that run report 23anMe results for Alzheimer's (like they do methyl cycle)??? 

Thanks, an welcome back. 


TheSteven
Posted: Saturday, February 20, 2016 9:05 PM
Joined: 10/11/2014
Posts: 167


Hi Daughter#2,

If you or your father have any of those dark dental fillings it may now be causing your problems as well be the cause of his diagnosis. I posted similar response to beckboo and others in the past. See http://amalgam.org/education/scientific-evidenceresearch/results-removal-amalgam-fillings/ or http://www.fda.gov/ohrms/dockets/dailys/02/Sep02/091602/80027dde.pdf


If you do still have some mercury fillings, see the other links and books listed in my July 4, 2015 blog entry at http://thestevenalztreatment.blogspot.com for information about proper removal and steps I had taken to alleviate symptoms until the the mercury fillings were removed. Removal and mercury detox may serve to be helpful for your symptoms as they were for my Alzheimer’s symptoms. I went from a diagnosis of Younger Onset Alzheimer's by doctors at Massachusetts General to Mild Cognitive Impairment due to improvement of my symptoms and my MRI's not having further noticiable decrease in brain size.


I have been weaning myself off the donepezil (Aricept) since my cognitive symptoms have improved. Tomorrow I stop it and replace it with Huperzine-A.



knuckysmom
Posted: Saturday, February 20, 2016 9:14 PM
Joined: 2/20/2016
Posts: 2


How often should Neuropsychology testing be done? I had one last year (age 46) and the findings were depression, mild cognitive impairment and Frontaltemporal impairment. I was put on Wellbutrin and Aricept. 

I can tell my depression has lifted, but I am having episodes where I am so angry for no reason, I have days where my problem solving skills are deeply diminished, and I sometimes feel disoriented in familiar places.

Should I have another test this year to see how I score without depression as a factor? The whole rage thing honestly scares me because I don't want to blow up on someone who did nothing wrong.


llee08032
Posted: Sunday, February 21, 2016 9:29 AM
Joined: 5/20/2014
Posts: 4408


Knuck,

You should follow up with your neurologist about further testing. I've had 2 neuro psych evals so far and have to have another a year from now. I had initial, and then another 6 mos from the initial. My Dr's want to compare the results of several tests. My neuropsychologist said they are looking for consistency in symptomatology, progression or improvement in all the domains. Your new symptoms need to be discussed with your neurologist. I am having similar issues with anger also and feel like I'm losing control of temperment. I worry about hurting others also and perhaps pushing them away. The only advice I've heard so far is to talk openly to your loved one's now and let them know that you experiencing difficulties controlling your anger and that it could possibly worsen in the future. 

It is important to let them know how concerned you are about hurting them. Also important that they be taught to look for triggers that may be causing you to be angry such as, pain, fatigue, hunger, thirst, overload from noise and environmental stimuli, stress, loneliness, boredom, not getting your emotional/physical needs met, not being able to communicate or articulate your needs and feeling frustrated as a consequence, etc. I'm sure others could add to the important list of needs that need to be met. 


Michael Ellenbogen
Posted: Sunday, February 21, 2016 9:47 AM
Joined: 11/30/2011
Posts: 4384


The one thing I keep reading hear on this boards is how those with some kind of dementia hate what the they have become when it comes to anger and their lack of self control to control. I point this out to all of my CG friends to realize that you have the control and we do not. Please use that information wisely. It also pertains to me.  We should all here on this board be more forgiving to each other as we all go thru many bad moments and that unfortunately is part of the course and out of our control. Let us remember the good of the individual not what they have become. We are now living in a different world lets make the best of it..

 


TheSteven
Posted: Sunday, February 21, 2016 5:46 PM
Joined: 10/11/2014
Posts: 167


Hi knuckysmom and llee08032,

The big 4 hour neuropsych test should not be done that often since it is often the same pictures and test that was done before. Every six months at my followup they do a quick neuropsych test. I have had three of those 4 hour long neuropsych tests since 2011. In my case, once they come up with a diagnosis in 2014 then they do the short ones every six months.

You have both mentioned experiencing anger. I don't know if you read the links about mercury I posted earlier, but anger is among the forty conditions and diseases caused by mercury dental fillings.  


Grit
Posted: Sunday, February 21, 2016 6:56 PM
Joined: 2/21/2016
Posts: 1


If you don't mind me asking, how old are you?  I'd find a new primary physician.  I'm 48 and memory issues began in 2010, diagnosed with MCI 2013 and just met my primary physician last week and he immediately wrote a referral for ALZ neurologist.
knuckysmom
Posted: Sunday, February 21, 2016 7:17 PM
Joined: 2/20/2016
Posts: 2


Thanks for the input. The rage thing is hard for me because I am passive by nature

Grit, whose age were asking about?


Daughter#2_
Posted: Thursday, February 25, 2016 4:43 AM
Joined: 12/29/2015
Posts: 11


I so can relate to the rage/anger piece.  It is not my nature, but I expend a lot of energy trying to temper it, and when I sense it is too much I just withdraw. That is happening much more lately. 

Grit- I am 46. Changing doctors is complicated and I think it is to my benefit if I maintain a relationship with a doctor who has known me across time~and can speak to the decline. 
I have a psychiatrist appointment today to address anxiety-related concerns and to check "mental-health diagnosis" off the list as a root-cause...I feel like I'm teaching-up sometimes. My last appointment was 15 minutes (sigh) I waited 6 weeks for it. When I re-iterated cognitive concerns, saying it could be from a number of factors, but we need to figure out WHY, she said  "...if you are worried about AD, at your age then that is unrealistic." (Ugh) and when I reminded her of my family history, she added,  "Well, THAT is very rare, and even if you are a carrier that does not mean you are going to get it." (*%@! Really? How can she not know the penetrance rate of EOAD?) ....after that comment, I envisioned myself getting up and taking her Med School diploma off the wall behind her and walking out *smile* Sometimes I have to find the humor~ 

Since that appointment I have been keeping track of my symptoms via an app called "Symple." I REALLY like it. You can track multiple times a day around a number of symptoms which it later charts in multiple formats. You can add pictures and export the data in an easy to read format.  It has been very handy and I'm hoping it will help relay the magnitude and reasoning behind my concerns better. I'm also bringing a picture of my Dad, taken about four years after his diagnosis and he's looking very clearly impaired. That helped to turn the GP a bit more serious. Every step of the way I have to justify my concerns. So exhausting. 

I am still hopeful that it could be something, anything, else. (I have one old gray filling, will have that removed! Thanks for that advice!) But realistically, not looking at it, or avoiding the uncomfortable (which is the overwhelming response from people) doesn't change what is/could be.  Grateful to be able to connect with folks here who have a shared experience and make it all less lonely.

 

 

 


Daughter#2_
Posted: Thursday, February 25, 2016 4:59 AM
Joined: 12/29/2015
Posts: 11


Sun- I used a third-party website, Prometheus, to expand the 23&Me  information, but they have a max magnitude (seriousness) of information they include, so most EOAD info is not included. It could be helpful to support differential diagnosis I suppose, ie. autoimmune suseptibility etc. The reports link to research behind any positive/negative findings, so I can get lost on the site for hours *smile. I found it interesting, but from a diagnostic perspective for EOAD not helpful. Note: you have to upload raw data from 23andMe, not hard, but providing that info is not without its risk.  http://dna-explained.com/2013/12/30/promethease-genetic-health-information-alternative/

 


The_Sun_Still_Rises
Posted: Thursday, February 25, 2016 7:30 AM
Joined: 7/24/2015
Posts: 3020


I used Genetic Genie (free) an Livewello ($20)...an I think my doctor just ran through prmethious...as she be have account it.  Reminds me, I will be have ask her for report. 

I had a number interesting defects them...an enjoyed HeartFixer's website explain all this.  My secondary doctor rx'd all kinds rounds of supplements for based on that Dr. Amy some thing or other.  All of which made me super sick.  So finally, I asked for a panel of labs...said, lets see *what* if an thing real be affected. 

http://heartfixer.com/AMRI-Nutrigenomics.htm

What labs came back show was that many things end line were affected.  Like, I had way too much folate, an I did no make adrenaline, or taurine...or enough Gaba (an made too much glutamate...which explain stiffness, tightness an all help I be get from Baclofen). 

This was way back when the just started reporting certain patterns for MS.  I be start wonder few things.  Like, if you had double defect in MTHFR gene/enzyme...then you would eith be dead by our age - or some other gene/enzyme must be adding a methyl group onto folate that they did no know bout (yet).  I mean, it just be make sense.  As aside from very high folate, an inability eat greens...I did no have an issue an thing came after that gene in methyl cycle.

I also be started question...just because pattern may be common disease...we still be had question, which be came first - chicken egg?  Does disease process start, create pattern in body cope with...or, did defect start it, create pattern body, cause disease?  I still think they be too earl process know this...yet.

I love this test man reas's, like knowing how much Neanderthal I be...or our true ansestory...but I used recommend peop be get lab panel who could no afford test (as insurance cover labs)...an yielded information you would be get at eventually. 

Still no one could explain *why* genes go bad...just like they can no explain *why* autoimmune...or *why* dementia...an more importantly, no one can be fix it...which is perhaps most challenging disheartening issue of all.  <3


TheSteven
Posted: Monday, February 29, 2016 2:28 PM
Joined: 10/11/2014
Posts: 167


Hi Daughter#2,

Be glad you only have one mercury filling left. When getting mercury filling removed, use an IAOMT dentist who is qualified to remove them without burning your brain with mercury. They use rubber dams so drilled mercury doesn't go into the rest of your mouth and give you air to breath in tubes in your nose. See https://iaomt.org/for-patients/search-for-dentist-physician/


Two fillings in a young teen was enough to give him lupus and neuropathy. Everyone is different so depending on your genetic predisposition of ability to fight mercury and where it binds it causes different diseases. https://www.youtube.com/watch?v=4Bau4OiTs1Q&index=5&list=PLIP8s7OVZPwoMA_IRZYcByNY6L2BIvh3N