investigating symptoms and discovering im 4/4

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leolouo
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investigating symptoms and discovering im 4/4

Postby leolouo » Fri Jan 10, 2020 5:10 pm

Hi, i am looking for advice, confidence, and comfort. Im 30. For years i've felt like my health has been struggling. Digestive, motivations, brain foginess and others. I've always known im a pragmatic character and didnt fall for the "all included package disease" like lyme even if i Found very disturbing to feel like i was getting older too quick.
Months ago, i started having fasciculations all over the body on addition to enhanced sleep problems.
It brought me to a neurologist that Found i had mild polyneuropathy through a nerve conduction test. We looked for more in bloodtest with nothing conclusive.
While i was waiting for mri results i decided to launch a genetic 123 test thinking it might help the confusion my neurologist went to.
AT first being 4/4 didnt worry me because of the reassuring statistics on 123andme.
But as an Analytics person i went through extensive scientific research.
I discovered that being apoe4 create internal modifications long time before ad.
I discovered it ups risks for cardiovascular disease, and that an important part of early onset ad people had apoe4/4. More importantly, early ad can have myoclonic and muscle twitching as a particular symptôme that late on stage dont have.
You understand while im very scared here, waiting for my next appointment on 3 Weeks.
This news made sense in a very weird way. Even if i dont lose consciousness or Have huge Loss of memory i Never inderstood while i Found reading less and less enjoyable with Time, asking for more concentration, or having difficulty to concentrate for long périods of time... It made sense with the poor cardiovascular systèm i have and the brain fog.

I am still obviously capable to be Quick and effective in my reasoning but it does feel like im not There sometimes.

I Read all of those very encouraging stories and the fact that i Twitch, have trouble sleeping is very worrying that it might too late for me to prevent things to happen. Im very thin, i have difficulties to gain weight, dont have high blood Sugar, (my Dr even Says i have antidiabetes) so im not sure what to change in my Diet.

I m not sure how to bring this to my neurologist or to foresee future. im scared at this point and would love to have your opinions. In a way, There is very Little people having ad that young, however it feels and looks like ive been very unfortunate with such problems. It really feels hard to focus and concentrate and i see this as an awful first very bad ad symptom. Im playing Strategy Games and keep making inattention mistake and Little forgets other players dont seem to Do.

Also: cbd/thc oil Makes me feel better but im not sure if dangers long term... Any opinion?

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Re: investigating symptoms and discovering im 4/4

Postby NF52 » Fri Jan 10, 2020 8:41 pm

leolouo wrote:Hi, i am looking for advice, confidence, and comfort. ...
You understand while im very scared here, waiting for my next appointment on 3 Weeks.
...I am still obviously capable to be Quick and effective in my reasoning but it does feel like im not There sometimes.
I Read all of those very encouraging stories and the fact that i Twitch, have trouble sleeping is very worrying that it might too late for me to prevent things to happen. Im very thin, i have difficulties to gain weight, dont have high blood Sugar, (my Dr even Says i have antidiabetes) so im not sure what to change in my Diet.
I m not sure how to bring this to my neurologist or to foresee future. im scared at this point and would love to have your opinions....
Hi leolouo,

You're very brave to face all this scary news and even more scary stuff that you don't have answers for at the age of 30. So please take some comfort from me--someone who also has ApoE 4/4 and who is doing just fine at almost age 68! I know many people my age and older who are also doing just fine with ApoE 4/4.

Here's several reasons why you don't have to feel it's too late:
1. Scientists are beginning to realize that ApoE 4 is NOT ENOUGH to bring on Alzheimers--other factors and other genes, which are only beginning to be identified, are also necessary.
2. Early-onset Alzheimer's is NOT caused by ApoE 4; it is caused by very specific genes that are dominant in some families. People with this gene have many relatives who died of Alzheimer's in their 40's or 50's. It is possible for some people to be diagnosed with Alzheimer's at a relatively young age (late 50's or early 60's) with ApoE 4, but usually they also had some very specific other factors: Down's Syndrome, early severe brain injury, etc. You are not at risk of Alzheimer's anytime soon!!
3. It sounds like your neurologist is trying to figure out what is causing the twitching you feel, and having a name and some suggestions for how to treat it, with medication, or with other strategies, may give you a sense of being more in control.
4. It also sounds like you may have been feeling a lot of anxiety, and maybe dread or fear, and a sense of being "not there" that have caused sleep problems--and may be worse because of sleep problems. I don't know a lot about CBD oil, but if I were you I would talk with my regular doctor if possible before the next appointment with the neurologist and show him this post--or at least tell him how you have been feeling. Anxiety is a common mental health issue, especially for people your age who are often juggling lots of stressful changes in adulthood. It's perfectly okay to ask for some help with that.

So you are not going to lose consciousness or your memory! I have a son a little older than you who has had lots of health problems--with heart surgery, asthma, frequent pneumonia. Facing all of those at once, or by himself, might have been too much. But facing one at a time, and having some support from friends and family, means he can now enjoy life and look forward to decades of good health. I hope you have some family and friends that you can lean on to help you through this period.

Please tell us a little more about yourself if you can. And please promise us that if you feel truly overwhelmed, and don't see a way forward, that you will call 911 or a local hotline to talk to someone. Hugs from someone who wants you to reach a better tomorrow.
4/4 and still an optimist!

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Melanie R.
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Re: investigating symptoms and discovering im 4/4

Postby Melanie R. » Fri Jan 10, 2020 8:49 pm

Hello leolouo,

I want to extend to you a warm welcome to the site. You've come to a good place. This is a supportive community and you have opened a conversation that others may want to contribute to from their own knowledge and experience.

As you continue to investiagate, you may want to take a moment to look through the Wiki . There are some wonderful resources in here that you may find useful, plus "how to" get the most out of the website.

You may also like the Primer which is an introduction to APOE4, biochemistry and possible prevention strategies written by Dr. Stavia a member, in laymans terms, plus plenty of other helpful resources.

It must feel very scary, and I want to pause here and offer up hope. There is much that can be done to reverse health decline through food, movement, stress management, supportive community and personal lifestyle interventions that will contribute to your overall well being, therefore; I encourage you to keep seeking and asking questions. The body has an innate way of knowing what to do when we provide it with the right tools. My hope is that you continue to dig in further to learn what works best for you, personally. Actually, as I write this I think about Dr. Terry Wahls, and her inspiring story. She was in a tilt recline wheelchair with MS and almost lost her medical license. She kept digging for answers, never giving up and look at her today! She's been an inspiration to so many
leolouo wrote:
Also: cbd/thc oil Makes me feel better but im not sure if dangers long term... Any opinion?


Once again welcome leolouo, we are so glad you are here!

Warmest regards,
Melanie
Functional Medicine Certified Health Coach
Reversing Cognitive Decline for Coaches (ReCODE)

leolouo
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Re: investigating symptoms and discovering im 4/4

Postby leolouo » Fri Jan 10, 2020 9:43 pm

1. Scientists are beginning to realize that ApoE 4 is NOT ENOUGH to bring on Alzheimers--other factors and other genes, which are only beginning to be identified, are also necessary.

I understand that fully but they do assess that is very important when other triggers are there and i have a lot. I had osgood schlatter when i was a teenager, a knee condition that prevented me from doing sport until i hit 17. I have years of smoking and drinking between 20 and 25y, eating fatty foods ( at least i cooked myself most of the time ), and i took a very hard shock on the head at 23 and always felt different after. My coma only last 30 seconds to 1 minute or so and i didnt have symptoms after but something changed in me for good after. I wasnt able to grasp my environnement the way i used to after, more slow, less depressed but less enjoyed, a bit more apathic. I learnt to live with it but i think it slightly got worse. I had very high viral episodes with a long lasting herpes, a huge epstein bar ( mononucleosis) that hit me at 18. As I understood it, pathogenic experiences, trauma in the head, and quality of life are very important and i am 0/10 on all those points. I consider this a very aggravating thing for me because i really feel the change in perception and concentration lately.

. 2 Early-onset Alzheimer's is NOT caused by ApoE 4; it is caused by very specific genes that are dominant in some families. People with this gene have many relatives who died of Alzheimer's in their 40's or 50's. It is possible for some people to be diagnosed with Alzheimer's at a relatively young age (late 50's or early 60's) with ApoE 4, but usually they also had some very specific other factors: Down's Syndrome, early severe brain injury, etc. You are not at risk of Alzheimer's anytime soon!!

I could but chose to not check the raw data on 123 and me about those genes because i know NOTHING can be done about it and decided it wasnt a good decision to check since being 4/4 Already requires to make all those changes.
Nonetheless, I especially read reports of EOAD from an extensive article from the 2000s where young guys in their 30s develop the disease and when they dont have the very specific genes, its because they have 4/4. On the top of that, those people had myoclonic and twitchs as a precursor, as I DO RIGHT NOW. ( myoclonic is very very mild tho, but the twitches are quite oppressives). Its been written down that being at risk for AD with twitchs or myoclonic is a big hint. I dont know what to do with this information since i can't find any recent report or story of young people with those symptoms that could hint or reassure me. Everyone here seems to have no idea what spread muscle twitching feels like.

3. It sounds like your neurologist is trying to figure out what is causing the twitching you feel, and having a name and some suggestions for how to treat it, with medication, or with other strategies, may give you a sense of being more in control.

Actually, yes and no, when she discovered i Had peripheral neuropathy she decided it was probably more important to find the reason for it. And as I guessed from my last readings, i think my peripheral neuropathy may simply be the result of my general health condition, ( Poor sleep ( maybe apnea, should check), poor cardiovascular health, and probably some amyloid stacking up somewhere and disturbing the whole thing.

4. It also sounds like you may have been feeling a lot of anxiety, and maybe dread or fear, and a sense of being "not there" that have caused sleep problems--and may be worse because of sleep problems. I don't know a lot about CBD oil, but if I were you I would talk with my regular doctor if possible before the next appointment with the neurologist and show him this post--or at least tell him how you have been feeling. Anxiety is a common mental health issue, especially for people your age who are often juggling lots of stressful changes in adulthood. It's perfectly okay to ask for some help with that.

This is only so true. It is not the most welcoming news though ive been through a lot of investigation never finding anything. Understanding the problem is still something, i guess.


Please tell us a little more about yourself if you can. And please promise us that if you feel truly overwhelmed, and don't see a way forward, that you will call 911 or a local hotline to talk to someone. Hugs from someone who wants you to reach a better tomorrow.

I deeply thank you for the extensive answer and thats why im iniating this long message back. I have my girlfriend supporting me but i dont think i should stress her that much.

You may also like the Primer which is an introduction to APOE4, biochemistry and possible prevention strategies written by Dr. Stavia a member, in laymans terms, plus plenty of other helpful resources.
Thanks, to be honest, its the first thing I read, and already ordered what I considered was the most important. Im starting soon, a bit scared of secondary effect ( on the digestive tract mostly )

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Re: investigating symptoms and discovering im 4/4

Postby TheresaB » Sat Jan 11, 2020 8:11 am

leolouo wrote:Also: cbd/thc oil Makes me feel better but im not sure if dangers long term... Any opinion?


According to Ben Greenfield, in this link https://bengreenfieldfitness.com/articl ... e-cbd-oil/

It's also nearly impossible to overdose on CBD. Kind of like water, dark chocolate, and steamed kale, it has an unusually low level of toxicity. In the last 6,000 years, CBD hasn’t killed anyone via overdose, which is particularly impressive when you compare it to non-steroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen, Advil and Tylenol, which can wreak havoc on your gut lining, liver and kidneys. Or aspirin (salicylic acid) which kills over 1,000 people every year. Or alcohol, which kills over 110,000 people a year. No one’s ever died from CBD.


Nevertheless, I would do some due diligence in making sure you're getting a quality product. Lots of companies have jumped on the CBD bandwagon to try to make a buck, so you want to make sure you have a product that is produced under strict quality assurance practices, is tested for cannabinoid quantitation, and screened for contaminants.

Have you read our wiki Cannabinoids, Cannabidiol (CBD), THC, HEMP, Marijuana, Cannabis
-Theresa
ApoE 4/4

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Re: investigating symptoms and discovering im 4/4

Postby leolouo » Sat Jan 11, 2020 8:47 am

I wouldnt really know where else to go than SQDC ( Official store for cannabis product in Quebec ). Where can i find informations about product quality?

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Re: investigating symptoms and discovering im 4/4

Postby roxanne » Sat Jan 11, 2020 3:33 pm

Hi Leolouo: It must have been shocking to hear the news of your 4/4 status, but know it will get better as time passes. In fact, you will be very happy you know as you will start changing things in your inner and outer environment that need to change in order for you to feel better.

First, please take a few deep breaths and go out for a walk with your girlfriend. When you come back you can sit and start sorting things out.

Anxiety can provoke all the symptoms you mention. I know because I have had whole body fasciculations and lack of sleep and fear of illness, and many others like heart racing, sweating, shooting pains all over my body. I can tell you that your neurologist is looking to diagnose you and that's why she requested an MRI.

Like NF52 said the risk of having Alzheimer's at your young age is very, very slim. Please tell us more about your family history. There are brilliant minds in this forum that can help you start a lifestyle program that will make you feel so much better because you will be in a higher state of consciousness and will move from a place of fear to finding solutions for you problems, no matter what they are and boy, that is empowering.

It's wonderful that you have a girlfriend and you can rely on her to share the good and bad moments in life. Don't worry about stressing her out, she probably likes being there for you. We generally want to extend a hand to those we love.

I'm sorry I don't know much about CBD Oil but Theresa had some good suggestions.

Roxane

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Re: investigating symptoms and discovering im 4/4

Postby TheresaB » Sat Jan 11, 2020 3:46 pm

leolouo wrote:I wouldnt really know where else to go than SQDC ( Official store for cannabis product in Quebec ). Where can i find informations about product quality?


I go online to investigate the seller and their products and then buy online. I don't live in Canada, but I believe there is no issue with ordering over the internet from US companies as long as you are buying CBD oil that is a hemp extract. I personally go with Bluebird Botanicals, https://bluebirdbotanicals.com/ take note of the information under the "Quality Control" link. But I'm sure there are other companies producing quality products.

If using a marijuana based CBD product, I should think you could still get information on the product over the internet, I know we have such information here in the US.

Good luck to you.
-Theresa
ApoE 4/4

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Re: investigating symptoms and discovering im 4/4

Postby SusanJ » Sat Jan 11, 2020 3:53 pm

leolouo wrote:...i took a very hard shock on the head at 23 and always felt different after. My coma only last 30 seconds to 1 minute or so and i didnt have symptoms after but something changed in me for good after. I wasnt able to grasp my environnement the way i used to after, more slow, less depressed but less enjoyed, a bit more apathic. I learnt to live with it but i think it slightly got worse.


Hi leolouo, and hugs to you for all you face. Chronic illness and its symptoms do wear on any of us who face them. I wonder if you followed the link to Dr. Stavia's post on TBI that is in the Primer. Well worth the read, to understand that the brain is capable of recovery, and perhaps it will provide you with some hope going forward.

viewtopic.php?f=6&t=647

IMHO, go for the foundational problems, like improving sleep. It seems a sleep study could help tease out the apnea possibility and making progress on sleep could get you off to a good start to tackle the others.

Hang in there, do what you can every day and be proud of that, even if it's as small as eating a healthy green salad with EVOO. I can say from experience, tackling chronic health issues is a marathon not a sprint, especially when you have multiple presenting symptoms. I've been at my challenges for 10 years and have had days I didn't want to get off the couch, so I hear your frustration. But also know, that I've had a lot of positive progress tackling things consistently over that time and am doing much, much better.

Do come back and let us know how things are going for you.

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Re: investigating symptoms and discovering im 4/4

Postby leolouo » Sat Jan 11, 2020 4:21 pm

Thank you Roxanne for the comforting answer, im not the kind to quit anyway, just very anxious when i confuse my words or find myself looking for word i use everyday for very long seconds.
I wasnt like that before.


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